Włóknienie płuc idiopatyczne – Charakterystyka, pielęgnacja i opieka

Włóknienie płuc idiopatyczne
Charakterystyka, pielęgnacja i opieka

Idiopatyczne włóknienie płuc (IPF) to przewlekła, postępująca choroba charakteryzująca się nieznaną etiologią i bliznowaceniem tkanki płucnej, prowadząca do pogorszenia funkcji oddechowej, duszności i kaszlu. Średnia przeżywalność bez leczenia wynosi 3-5 lat od diagnozy. Diagnostyka i opieka nad pacjentem wymagają multidyscyplinarnego podejścia, w tym wczesnej oceny pielęgniarskiej, monitorowania saturacji tlenem, objawów takich jak trzeszczenia w płucach (obecne u >90% pacjentów) i palce pałeczkowate (około 50%). Leczenie farmakologiczne opiera się na lekach przeciwzwłóknieniowych: nintedanib i pirfenidon, które spowalniają progresję choroby. Kluczowe jest także wsparcie psychiczne, rehabilitacja pulmonologiczna oraz edukacja pacjenta i rodziny w zakresie samodzielnego zarządzania chorobą i zapobiegania infekcjom.

Wprowadzenie do idiopatycznego włóknienia płuc

Idiopatyczne włóknienie płuc (IPF) to rzadka, przewlekła, postępująca choroba płuc charakteryzująca się bliznowaceniem tkanki płucnej bez znanej przyczyny. Schorzenie charakteryzuje się postępującym pogarszaniem funkcji płuc, dusznością i kaszlem, co prowadzi do znacznego upośledzenia jakości życia pacjentów¹². IPF dotyka głównie osoby starsze, częściej mężczyzn, i ma złe rokowanie – średnia przeżycia wynosi 3-5 lat od diagnozy bez leczenia³⁴. Wyniszczające i uporczywe objawy IPF, jego niekorzystne rokowanie oraz niepewność dotycząca przebiegu choroby mogą mieć druzgocący wpływ na życie pacjentów i ich rodzin⁵.

Wczesne skierowanie do specjalistów jest kluczowe dla zapewnienia szybkiej i dokładnej diagnozy⁶. Obecnie dostępne są dwa leki przeciwzwłóknieniowe (nintedanib i pirfenidon), które zostały zatwierdzone do leczenia IPF i mogą spowolnić progresję choroby⁷. Optymalne postępowanie objawowe wymaga podejścia multidyscyplinarnego, koncentrującego się na edukacji pacjenta i samodzielnym zarządzaniu chorobą w celu opracowania planu leczenia i celów opieki⁸.

Ocena pielęgniarska w idiopatycznym włóknieniu płuc

Pierwszym krokiem w zapewnieniu opieki pacjentom z włóknieniem płuc jest dokładna ocena pielęgniarska⁹. Obejmuje ona kompleksową ocenę stanu zdrowia pacjenta, ze szczególnym uwzględnieniem układu oddechowego i funkcji płuc. Pielęgniarki powinny ocenić:

Stan układu oddechowego i saturację tlenem¹⁰
Oznaki niewydolności oddechowej lub hipoksemii¹¹
Zdolność pacjenta do wykonywania codziennych czynności¹²
Monitorowanie powikłań, takich jak infekcje układu oddechowego lub problemy z sercem¹³

Podczas oceny pielęgniarskiej należy zwrócić szczególną uwagę na poniższe aspekty, które są kluczowe dla określenia odpowiedniego planu opieki:

Ocena fizyczna

Badanie fizyczne powinno koncentrować się na dwóch kluczowych objawach¹⁴:

Trzeszczenia podczas wdechu – ten objaw może być najwcześniejszym klinicznym objawem i jest charakterystycznym elementem IPF, występującym u ponad 90% pacjentów¹⁵
Palce pałeczkowate – obecne u około 50% pacjentów

IPF jest mało prawdopodobne w przypadku występowania objawów choroby tkanki łącznej, takich jak deformacja stawów, zapalenie błony maziowej, osłabienie mięśni i wysypka¹⁶.

Ocena psychospołeczna

Ocena powinna również obejmować stan psychiczny pacjenta, ponieważ pacjenci z IPF często doświadczają lęku i depresji związanych z przewlekłą chorobą i dusznością¹⁷. Należy ocenić:

Poziom lęku i mechanizmy radzenia sobie z chorobą
Wsparcie rodzinne i społeczne
Zrozumienie choroby i planu leczenia przez pacjenta¹⁸

Diagnozy pielęgniarskie w idiopatycznym włóknieniu płuc

Na podstawie oceny pielęgniarki mogą zidentyfikować kilka kluczowych diagnoz pielęgniarskich związanych z IPF, które stanowią ramy do opracowania kompleksowego planu opieki¹⁹:

Zaburzenia wymiany gazowej związane ze zmianami w błonie pęcherzykowo-włośniczkowej wtórnie do włóknienia płuc, objawiające się dusznością, zmniejszoną saturacją tlenem i nieprawidłowymi wartościami gazometrii krwi tętniczej²⁰²¹
Nieefektywny wzorzec oddychania związany ze zmniejszoną podatnością płuc wtórnie do włóknienia płuc, objawiający się tachypnoe, płytkim oddychaniem i wykorzystaniem dodatkowych mięśni oddechowych²²

Diagnozy funkcjonalne

Nietolerancja aktywności związana z nierównowagą między podażą tlenu a zapotrzebowaniem wtórnie do włóknienia płuc, objawiająca się dusznością podczas wysiłku i zmęczeniem przy minimalnej aktywności²³²⁴

Diagnozy psychospołeczne

Lęk związany z przewlekłym procesem chorobowym i dusznością, objawiający się wyrażonymi uczuciami niepokoju, niepokojem i zwiększoną częstością oddechów²⁵
Nieefektywne zarządzanie stanem zdrowia związane z deficytem wiedzy dotyczącej zarządzania włóknieniem płuc, objawiające się mylnymi przekonaniami i nieprzestrzeganiem planu leczenia²⁶

Interwencje pielęgniarskie dla pacjentów z IPF

Interwencje pielęgniarskie dla pacjentów z włóknieniem płuc koncentrują się na poprawie natlenienia, zarządzaniu objawami i poprawie jakości życia²⁷. Poniżej przedstawiono kluczowe obszary interwencji pielęgniarskich:

Wsparcie oddechowe

Podawanie tlenu uzupełniającego zgodnie z zaleceniami i pomoc w nieinwazyjnej wentylacji, jeśli jest potrzebna²⁸²⁹
Regularna ocena zapotrzebowania na tlen, szczególnie podczas wysiłku³⁰
Nauka technik oszczędzania energii i efektywnego zarządzania zadaniami w celu zmniejszenia duszności³¹
Monitorowanie skuteczności tlenoterapii i dostosowywanie przepływu w razie potrzeby³²

Zarządzanie objawami

Główne objawy IPF, które znacząco wpływają na jakość życia pacjentów, to duszność, kaszel i zmęczenie³³. Zarządzanie tymi objawami przy obecnie dostępnych metodach leczenia pozostaje wyzwaniem³⁴.

Współpraca z zespołem medycznym w zakresie terapii farmakologicznej – stosowanie leków przeciwzwłóknieniowych (nintedanib, pirfenidon)³⁵³⁶
Monitorowanie skuteczności leczenia i potencjalnych działań niepożądanych³⁷
Wsparcie w technikach oddechowych zmniejszających duszność i kaszel³⁸
Zapewnienie środków łagodzących zmęczenie, takich jak planowanie aktywności i odpoczynku³⁹
Rozważenie stosowania leków przeciwlękowych i przeciwdepresyjnych w przypadku zaburzeń psychicznych⁴⁰

Rehabilitacja pulmonologiczna

Rehabilitacja pulmonologiczna jest kluczowym elementem w opiece nad pacjentami z IPF⁴¹. Jest ona zalecana dla pacjentów przez cały przebieg choroby i powinna być dostosowana do potrzeb pacjentów z IPF, które różnią się od potrzeb pacjentów z innymi chorobami płuc, takimi jak POChP⁴².

Kierowanie pacjentów na programy rehabilitacji pulmonologicznej, które obejmują ćwiczenia fizyczne w celu poprawy wytrzymałości⁴³
Nauczanie technik oddechowych, które mogą poprawić wykorzystanie tlenu przez płuca⁴⁴
Monitorowanie postępów pacjenta w programie rehabilitacji⁴⁵
Edukacja w zakresie zarządzania energią i lepszego planowania zadań⁴⁶

Edukacja pacjenta i rodziny

Edukacja pacjenta i samodzielne zarządzanie chorobą są kluczowe, aby pomóc pacjentom z IPF zarządzać swoją chorobą i podejmować decyzje dotyczące opieki⁴⁷. Opieka pielęgniarska powinna obejmować:

Edukację pacjenta i rodziny na temat procesu chorobowego i zalecanie zasobów społecznych w celu wsparcia⁴⁸
Naukę strategii unikania czynników drażniących układ oddechowy, takich jak kurz, pleśń i sierść zwierząt⁴⁹
Podkreślanie znaczenia optymalnych praktyk higieny rąk⁵⁰
Nauczanie zapobiegania infekcjom układu oddechowego poprzez unikanie tłumów i osób chorych⁵¹⁵²
Edukację na temat procesu chorobowego, progresji i strategii samoopieki⁵³

Wsparcie emocjonalne

Pacjenci z IPF często wymagają wsparcia w pogodzeniu się z diagnozą i radzeniu sobie z wyzwaniami związanymi z chorobą⁵⁴. Wspierające pielęgniarki są kluczowe w pomaganiu pacjentom w dostosowaniu się i rozwijaniu strategii radzenia sobie⁵⁵.

Zapewnienie wsparcia emocjonalnego pacjentom i ich rodzinom⁵⁶
Pomoc w radzeniu sobie z niepewnością związaną z przewlekłą chorobą⁵⁷
Kierowanie do grup wsparcia dla pacjentów z IPF⁵⁸
Ocena zdrowia emocjonalnego i psychicznego⁵⁹
Niefarmakologiczne strategie zarządzania zaburzeniami psychicznymi, takie jak poradnictwo dla pacjentów, terapia poznawczo-behawioralna i uczestnictwo w grupach wsparcia⁶⁰

Planowanie zaawansowanej opieki i opieka u schyłku życia

Ze względu na postępujący charakter IPF, opieka paliatywna powinna być brana pod uwagę już na wczesnym etapie procesu chorobowego⁶¹. Omawianie oczekiwań i życzeń dotyczących opieki u schyłku życia może pomóc pacjentom poprawić ich nastawienie psychiczne i zmniejszyć stres zarówno u pacjentów, jak i u ich rodzin⁶².

Opieka paliatywna

Wczesne skierowanie do opieki paliatywnej jest zalecane jako uzupełnienie leczenia ukierunkowanego na chorobę w IPF⁶³
Celem opieki paliatywnej jest poprawa jakości życia pacjentów i ich opiekunów przez cały przebieg choroby⁶⁴
Opieka paliatywna może być prowadzona w różnych miejscach, w tym w domu, szpitalu, domu opieki lub hospicjum⁶⁵
Ponieważ wielu pacjentów interpretuje opiekę paliatywną jako opiekę u schyłku życia, należy dokładnie wyjaśnić jej znaczenie lub używać alternatywnej terminologii, takiej jak „opieka wspierająca”, aby uniknąć niepotrzebnych obaw⁶⁶

Opieka u schyłku życia

Terminowa dyskusja o ograniczeniach leczenia, związanych z resuscytacją i hospitalizacją na OIT, jest ważna dla zapobiegania niepożądanym interwencjom medycznym⁶⁷
Pacjenci powinni być informowani o możliwych negatywnych konsekwencjach hospitalizacji na OIT, aby mogli podejmować przemyślane decyzje⁶⁸
Terminowe rozmowy o miejscu umierania pozwolą pacjentom umrzeć w otoczeniu rodziny i w wybranym przez nich miejscu⁶⁹
Pacjenci mogą potrzebować specjalistycznej opieki pielęgniarskiej związanej z toaletą lub jedzeniem, o czym można uzyskać poradę od zespołu opieki paliatywnej lub hospicjum⁷⁰

Przeszczep płuc

Przeszczep płuc może być opcją dla niektórych osób z zaawansowanym IPF⁷¹⁷²
Skierowanie na przeszczep płuc powinno być rozważone wcześnie w przebiegu choroby, szczególnie u pacjentów doświadczających postępującego spadku funkcji płuc⁷³
IPF jest obecnie najczęstszym wskazaniem do przeszczepienia płuc, a biorąc pod uwagę ogólnie złe rokowanie zaawansowanego IPF, przeszczep przynosi korzyści w zakresie przeżycia u odpowiednio dobranych pacjentów⁷⁴
Pacjenci na liście oczekujących na przeszczep powinni kontynuować leczenie przeciwzwłóknieniowe, ponieważ wykazano, że zmniejsza ono progresję choroby i nie zwiększa częstości występowania powikłań po przeszczepieniu⁷⁵

Rola wyspecjalizowanej opieki pielęgniarskiej w zarządzaniu IPF

Pielęgniarki odgrywają kluczową rolę w opiece nad pacjentami z IPF. Są kluczowe w zapewnianiu najlepszej opieki wspierającej, która powinna być dostosowana do ciężkości i tempa progresji choroby oraz preferencji pacjenta od diagnozy aż po opiekę u schyłku życia⁷⁶.

Specjaliści pielęgniarstwa w IPF

Pielęgniarki specjalizujące się w chorobach śródmiąższowych płuc (ILD) odgrywają cenną rolę w pomaganiu pacjentom w zrozumieniu ich diagnozy i niepewnego rokowania oraz w dostarczaniu informacji na temat badań i postępowania⁷⁷. Specjalista powinien być dostępny przez cały proces opieki⁷⁸.

Pielęgniarka specjalistyczna postrzegana jest jako kluczowy zasób, umożliwiający pacjentom i opiekunom dostęp do pomocy w praktycznym zarządzaniu chorobą i uruchamiający interwencję medyczną, gdy jest to wymagane⁷⁹
Pielęgniarka specjalistyczna jest integralną częścią zespołu multidyscyplinarnego w opiece nad pacjentami z IPF⁸⁰
Pielęgniarki odgrywają kluczową rolę komunikacyjną w zespole multidyscyplinarnym, edukując pacjentów i ich opiekunów⁸¹

Koordynacja zespołu multidyscyplinarnego

Postępujący charakter IPF oznacza, że opieka powinna być dzielona między specjalistycznymi a lokalnymi usługami⁸². Pielęgniarki odgrywają kluczową rolę w koordynacji opieki między różnymi dyscyplinami i placówkami.

Pielęgniarki ułatwiają i koordynują opiekę multidyscyplinarną⁸³
Wspierają pacjentów w przejściu między różnymi placówkami opieki zdrowotnej⁸⁴
Zapewniają ciągłość opieki przez cały przebieg choroby⁸⁵
Monitorują progresję choroby i wycofują nieskuteczne terapie, które mogłyby powodować szkody lub dalej upośledzać jakość życia pacjenta⁸⁶

Rzecznictwo pacjenta

Pielęgniarki są rzecznikami pacjentów, zapewniając, że ich potrzeby i preferencje są uwzględniane w planie opieki⁸⁷
Pomagają pacjentom w dostępie do odpowiednich usług i wsparcia⁸⁸
Wspierają pacjentów w podejmowaniu świadomych decyzji dotyczących ich opieki⁸⁹
Priorytetowe traktowanie preferencji pacjenta może poprawić proces wspólnego podejmowania decyzji i ostatecznie prowadzić do lepszych wyników zdrowotnych⁹⁰

Praktyczne strategie opieki pielęgniarskiej dla pacjentów z IPF

Skuteczne strategie opieki pielęgniarskiej dla pacjentów z IPF są niezbędne w zarządzaniu objawami, promowaniu zaangażowania w opiekę i zapewnieniu kompleksowego wsparcia⁹¹.

Zarządzanie codzienną opieką

Przestrzeganie planu leczenia – zaleca się regularne leczenie od zespołu opieki zdrowotnej, przyjmowanie leków zgodnie z zaleceniami, dostosowywanie diety i ćwiczeń w razie potrzeby oraz uczestnictwo w sesjach rehabilitacji pulmonologicznej⁹²
Zapobieganie infekcjom – częste mycie rąk, dezynfekcja powierzchni i unikanie zatłoczonych miejsc, szczególnie w sezonie przeziębień i grypy, oraz gdy przypadki COVID-19 są wysokie, może pomóc uniknąć częstych chorób⁹³
Aktywność fizyczna – pozostanie aktywnym i unikanie siedzącego trybu życia jest ważne. Ćwiczenia nie zmieniają faktu, że włóknienie płuc z czasem się pogorszy, ale mogą znacząco poprawić samopoczucie pacjentów⁹⁴
Miejsce zamieszkania – zaleca się, aby pacjenci z włóknieniem płuc mieszkali na niższych wysokościach i unikali obszarów o złej jakości powietrza⁹⁵

Techniki oszczędzania energii

Jednym z kluczowych podejść jest edukacja na temat procesu chorobowego, zachęcanie pacjentów do zrozumienia ich stanu, rozpoznawania objawów i przestrzegania planów leczenia⁹⁶. Pielęgniarki mogą wdrażać ustrukturyzowane sesje edukacyjne, które zawierają informacje na temat:

Znaczenia przestrzegania zaleceń dotyczących leków⁹⁷
Technik oszczędzania energii⁹⁸
Wskazówek żywieniowych pomagających utrzymać ogólny stan zdrowia⁹⁹
Strategii efektywnego planowania i zarządzania zadaniami w celu zmniejszenia duszności¹⁰⁰

Planowanie wypisu

Opracowanie kompleksowego planu wypisu, który obejmuje zasoby do opieki domowej, wizyty kontrolne i wsparcie społeczne, może znacząco pomóc pacjentom skutecznie zarządzać swoim stanem i poprawić ich niezależność¹⁰¹.

Zapewnienie jasnych instrukcji dotyczących zarządzania objawami w domu
Koordynacja wizyt kontrolnych u specjalisty¹⁰²
Połączenie z zasobami społecznymi i grupami wsparcia¹⁰³
Zapewnienie informacji o tym, kiedy szukać pilnej pomocy medycznej¹⁰⁴

Wsparcie dla opiekunów

Opiekunowie również mają niezaspokojone potrzeby i powinni być wspierani odpowiednimi strategiami, w tym programami edukacyjnymi oraz wsparciem społecznym i psychologicznym¹⁰⁵.

Aktywne uczestnictwo w leczeniu medycznym bliskiej osoby¹⁰⁶
Pomoc bliskiej osobie w utrzymaniu zdrowej diety i programu ćwiczeń¹⁰⁷
Pozwalanie bliskiej osobie na robienie wszystkiego, co może, tak długo, jak to możliwe¹⁰⁸
Pomoc w zapobieganiu infekcjom układu oddechowego¹⁰⁹
Poznanie tematu dyrektyw zaawansowanych, takich jak testamenty życia i pełnomocnictwo medyczne, na długo przed tym, zanim wydają się potrzebne¹¹⁰
Proszenie o pomoc w razie potrzeby i akceptowanie pomocy, gdy jest oferowana¹¹¹

Ocena skuteczności opieki pielęgniarskiej

Regularna ocena skuteczności opieki pielęgniarskiej jest kluczowa dla zapewnienia optymalnych wyników dla pacjentów z IPF¹¹². Pielęgniarki powinny:

Monitorować poprawę lub stabilizację funkcji oddechowej¹¹³
Oceniać skuteczność strategii zarządzania objawami¹¹⁴
Oceniać zrozumienie choroby i praktyk samoopieki przez pacjenta i rodzinę¹¹⁵
Monitorować powikłania lub pogorszenie stanu¹¹⁶

Skuteczna opieka pielęgniarska powinna prowadzić do osiągnięcia następujących celów¹¹⁷:

Utrzymanie optymalnej funkcji oddechowej¹¹⁸
Skuteczne zarządzanie objawami, takimi jak duszność i zmęczenie¹¹⁹
Zwiększona zdolność do wykonywania codziennych czynności¹²⁰
Edukacja pacjenta i rodziny na temat progresji i zarządzania chorobą¹²¹

Poprawa opieki pielęgniarskiej poprzez koordynację

Badania wykazały, że włączenie koordynatora opieki w rutynowe zarządzanie pacjentami z IPF może poprawić satysfakcję pacjentów, oszczędzić czas lekarzy i prowadzić do rocznych oszczędności kosztów¹²². Koordynator opieki może umożliwić dodatkowe wizyty pacjentów z IPF i potencjalnie przynieść oszczędności kosztów dla instytucji i potencjalnie dla systemu opieki zdrowotnej¹²³.

Proponowany model opieki Triple A dla opieki skoncentrowanej na pacjencie w zwłóknieniu płuc – Dostęp, Przewidywanie i Działanie – służy jako narzędzie do dostarczania spersonalizowanej opieki¹²⁴:

Dostęp (Access) odnosi się do zwiększania świadomości na temat IPF wśród klinicystów i ogółu społeczeństwa oraz przyjmowania technologii e-zdrowia, zapewniając wczesny dostęp do specjalistycznych ośrodków, informacji i edukacji oraz opcji badań klinicznych¹²⁵
Przewidywanie (Anticipate) obejmuje ciągłą ocenę potrzeb pacjenta, środki zapobiegawcze, monitorowanie choroby i planowanie zaawansowanej opieki¹²⁶
Działanie (Act) koncentruje się na terminowym rozpoczęciu leczenia modyfikującego chorobę i łagodzeniu objawów, wczesnej ocenie do przeszczepu płuc i szybkim przyjęciu opieki u schyłku życia¹²⁷

Wyzwania w opiece pielęgniarskiej IPF

Pomimo rosnącego nacisku na podejście skoncentrowane na pacjencie, nadal trudno jest przyjąć je w praktyce klinicznej¹²⁸. Niektóre z wyzwań w opiece pielęgniarskiej nad pacjentami z IPF obejmują:

Bariery w optymalnej opiece

Ograniczona wiedza o IPF wśród pracowników służby zdrowia, co może prowadzić do opóźnionej diagnozy i nieadekwatnej opieki dla pacjentów i ich rodzin¹²⁹
Ograniczenia czasowe w codziennej praktyce, które mogą utrudniać kompleksową ocenę potrzeb¹³⁰
Niedostateczne skierowania do rehabilitacji pulmonologicznej i opieki paliatywnej – badania w Anglii wykazały, że tylko 12% pacjentów z IPF otrzymało skierowanie na rehabilitację pulmonologiczną, a mniej niż 2% ukończyło program PR¹³¹
Około jednej piątej (19,4%) pacjentów z IPF otrzymało skierowanie do ogólnych usług wsparcia opieki paliatywnej, co jest znacznie poniżej zgłaszanych wskaźników skierowań do opieki paliatywnej dla pacjentów z rakiem płuc¹³²
Opóźnione skierowania do opieki paliatywnej – wśród tych, którzy zmarli, 31% zostało skierowanych tylko w ciągu miesiąca przed śmiercią, a 70% w ciągu 6 miesięcy¹³³

Nierówności w opiece

Zidentyfikowano kilka czynników związanych z brakiem skierowania; w przypadku rehabilitacji pulmonologicznej najważniejszymi czynnikami były płeć żeńska, starszy wiek i współdiagnoza demencji. W przypadku opieki paliatywnej najważniejszymi barierami dla skierowania były płeć żeńska lub pochodzenie azjatyckie lub czarnoskóre¹³⁴.

Luki w edukacji

Potrzeba lepszego zrozumienia IPF wśród pracowników służby zdrowia¹³⁵
Potrzeba specjalistycznego szkolenia dla pielęgniarek w zakresie opieki nad pacjentami z IPF¹³⁶
Bariery w przepisywaniu leków przeciwzwłóknieniowych obejmują opóźnione skierowanie do ośrodków specjalistycznych, ograniczenia w przepisywaniu na podstawie celów przewidywanego procentu natężonej pojemności życiowej (%FVC), podejście „obserwuj i czekaj” przyjmowane przez pacjentów i klinicystów oraz profil działań niepożądanych leków¹³⁷

Przyszłe kierunki w opiece pielęgniarskiej IPF

Krajobraz opieki nad pacjentami z IPF szybko się zmienił wraz z pojawieniem się nowych terapii, a badania kliniczne trwają. Jednak niefarmakologiczne postępowanie pozostaje wyzwaniem ze względu na brak dowodów¹³⁸. Czas na badania prowadzone przez pielęgniarki nigdy nie był lepszy¹³⁹.

Potrzeby badawcze

Badania nad skutecznymi interwencjami niefarmakologicznymi dla pacjentów z IPF¹⁴⁰
Ocena wpływu koordynatora opieki na wykorzystanie zasobów opieki zdrowotnej¹⁴¹
Badanie długoterminowych wyników programów edukacyjnych dla pacjentów i opiekunów¹⁴²

Potrzeby edukacyjne

Zwiększenie świadomości IPF wśród klinicystów i ogółu społeczeństwa¹⁴³
Poprawa edukacji pracowników służby zdrowia spoza dziedziny pulmonologii na temat objawów prezentacyjnych IPF¹⁴⁴
Wykorzystywanie informatyki wspomaganej komputerowo¹⁴⁵
Usprawnienie ścieżek skierowań¹⁴⁶
Planowane zmiany w wymogach %FVC dla osób rozpoczynających leczenie przeciwzwłóknieniowe¹⁴⁷

Ulepszenia modelu opieki

Optymalizacja opieki skoncentrowanej na pacjencie nie jest możliwa bez zrozumienia potrzeb pacjentów i ich opiekunów¹⁴⁸. Potrzeby pacjentów powinny być centralnym punktem i przewidywane na każdym etapie opieki¹⁴⁹.

Kluczowe zidentyfikowane potrzeby to zwiększenie świadomości choroby i specyficznej dla choroby edukacji, wczesna i dokładna diagnoza, dostęp do wyspecjalizowanych ośrodków, dostęp do leczenia przeciwzwłóknieniowego, koncentracja na zarządzaniu opartym na objawach, dostęp do badań klinicznych i wsparcie psychologiczne¹⁵⁰.

Podsumowując, wierzymy, że rutynowe poruszanie zagadnień z trzech domen modelu opieki Triple A w praktyce klinicznej może poprawić przyjęcie bardziej indywidualnie dostosowanego podejścia do opieki nad pacjentami z włóknieniem płuc¹⁵¹.

Kolejne rozdziały

Zapraszamy do dalszego czytania naszego leksykonu.

Wybierz kolejny rozdział z menu poniżej, aby otworzyć nową podstronę kompedium wiedzy i uzyskać szczegółowe informację o leku, substancji lub chorobie.

Materiały źródłowe

#1
https://journals.lww.com/tnpj/fulltext/2018/05000/idiopathic_pulmonary_fibrosis__a_guide_for_nurse.9.aspx
Idiopathic pulmonary fibrosis (IPF) is a rare disease characterized by decline in lung function, dyspnea, and cough. Early referral to specialists is key to ensure timely and accurate diagnosis. Two antifibrotic drugs (nintedanib and pirfenidone) have been approved for the treatment of IPF. […] The disabling and relentless symptoms of IPF, its poor prognosis, and uncertainties around the course of the disease can have a devastating impact on the lives of patients and their families. IPF has no cure; however, caregivers can help patients to better understand and manage their disease, evaluate treatment options, and access support to improve their quality of life. […] Optimal symptom management requires a multidisciplinary approach focusing on patient education and self-management to develop a treatment plan and goals of patient care.
#2 Idiopathic Pulmonary Fibrosis – StatPearls – NCBI Bookshelf
https://www.ncbi.nlm.nih.gov/books/NBK448162/
Idiopathic pulmonary fibrosis (IPF) is a progressive lung disorder characterized by scarring of the lungs from an unknown cause. The condition has a poor long-term prognosis. Classic features of IPF include the gradual onset of shortness of breath, progressive dyspnea, and a dry, nonproductive cough. […] Early diagnosis is pivotal for effective management, given the disease’s tendency to progress rapidly in advanced stages. […] Treatment strategies include supportive measures, oxygen supplementation as required, antifibrotic medications, and, in severe cases, lung transplantation, which stands as the sole curative option. […] This activity comprehensively reviews the etiology, epidemiology, clinical manifestations, evaluation, and management of IPF in adults, highlighting the role of the interprofessional healthcare team in its evaluation, diagnosis, and management.
#3 Management of Idiopathic Pulmonary Fibrosis
https://pmc.ncbi.nlm.nih.gov/articles/PMC6745766/
Overall, the prognosis for patients with IPF is poor; data collected in the United States prior to the availability of drugs that slow the progression of IPF showed that the typical survival interval after diagnosis was 3 to 5 years. […] Management of symptoms, particularly dyspnea, cough, and fatigue, is important for preserving quality of life in patients with IPF but is extremely challenging given the lack of evidence-based therapies. […] The 2011 ATS/ERS/JRS/ALAT guidelines strongly recommended the use of supplemental oxygen in patients with IPF and significant resting hypoxemia. […] These guidelines also recommend pulmonary rehabilitation as part of the management of IPF, given its potential to improve exercise capacity, dyspnea, and quality of life. […] Familiarity with this uncommon disease and its management will assist the pharmacist in caring for patients with IPF.
#4 Pulmonary Fibrosis: Causes, Symptoms & Treatment
https://my.clevelandclinic.org/health/diseases/10959-pulmonary-fibrosis
Lung scarring is nearly always permanent (unless caused by a medication and caught early). If you have an underlying disease, management of it might help prevent further damage. If the cause is unknown, your healthcare provider will treat your symptoms and try to prevent more damage. […] The life expectancy of someone with the most common form, idiopathic pulmonary fibrosis, is three to five years. But life expectancies for people with PF have been getting longer in recent years.
#5
https://journals.lww.com/tnpj/fulltext/2018/05000/idiopathic_pulmonary_fibrosis__a_guide_for_nurse.9.aspx
Idiopathic pulmonary fibrosis (IPF) is a rare disease characterized by decline in lung function, dyspnea, and cough. Early referral to specialists is key to ensure timely and accurate diagnosis. Two antifibrotic drugs (nintedanib and pirfenidone) have been approved for the treatment of IPF. […] The disabling and relentless symptoms of IPF, its poor prognosis, and uncertainties around the course of the disease can have a devastating impact on the lives of patients and their families. IPF has no cure; however, caregivers can help patients to better understand and manage their disease, evaluate treatment options, and access support to improve their quality of life. […] Optimal symptom management requires a multidisciplinary approach focusing on patient education and self-management to develop a treatment plan and goals of patient care.
#6
https://www.nursingcenter.com/journalarticle?Article_ID=4625068&Journal_ID=54012&Issue_ID=4624941
Idiopathic pulmonary fibrosis (IPF) is a rare disease characterized by decline in lung function, dyspnea, and cough. […] Early referral to specialists is key to ensure timely and accurate diagnosis. […] Two antifibrotic drugs (nintedanib and pirfenidone) have been approved for the treatment of IPF.
#7
https://www.nhs.uk/conditions/idiopathic-pulmonary-fibrosis/
Idiopathic pulmonary fibrosis (IPF) is a condition in which the lungs become scarred and breathing becomes increasingly difficult. […] Several treatments can help reduce the rate at which IPF gets worse, but there’s currently no treatment that can stop or reverse the scarring of the lungs. […] There’s currently no cure for IPF, but there are several treatments that can help relieve the symptoms and slow down its progression. […] Treatments include: self care measures, such as stopping smoking, eating healthily and exercising regularly; medicines to reduce the rate at which scarring worsens, such as pirfenidone and nintedanib; breathing oxygen through a mask you can do this while you’re at home or while you’re out and about; exercises and advice to help you breathe more easily (pulmonary rehabilitation); a lung transplant this is suitable in a few cases, although donor lungs are rare.
#8
https://journals.lww.com/tnpj/fulltext/2018/05000/idiopathic_pulmonary_fibrosis__a_guide_for_nurse.9.aspx
Idiopathic pulmonary fibrosis (IPF) is a rare disease characterized by decline in lung function, dyspnea, and cough. Early referral to specialists is key to ensure timely and accurate diagnosis. Two antifibrotic drugs (nintedanib and pirfenidone) have been approved for the treatment of IPF. […] The disabling and relentless symptoms of IPF, its poor prognosis, and uncertainties around the course of the disease can have a devastating impact on the lives of patients and their families. IPF has no cure; however, caregivers can help patients to better understand and manage their disease, evaluate treatment options, and access support to improve their quality of life. […] Optimal symptom management requires a multidisciplinary approach focusing on patient education and self-management to develop a treatment plan and goals of patient care.
#9 Pulmonary Fibrosis Nursing Diagnosis & Care Plan – NurseStudy.Net
https://nursestudy.net/pulmonary-fibrosis-nursing-diagnosis/
Pulmonary fibrosis is a chronic, progressive lung disease characterized by the formation of scar tissue in the lungs. This nursing diagnosis is crucial for healthcare providers to understand, as it guides the development of comprehensive care plans for patients with this condition. […] The first step in providing care for patients with pulmonary fibrosis is a thorough nursing assessment. […] Nursing interventions for patients with pulmonary fibrosis focus on improving oxygenation, managing symptoms, and enhancing quality of life. […] The following nursing care plans provide a framework for addressing the key nursing diagnoses associated with pulmonary fibrosis. […] Nursing Diagnosis: Impaired Gas Exchange related to alveolar-capillary membrane changes secondary to pulmonary fibrosis as evidenced by dyspnea, decreased oxygen saturation, and abnormal arterial blood gas values.
#10 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Continuous monitoring of respiratory status and oxygen saturation. […] Assess for signs of respiratory distress or hypoxemia. […] Evaluate the patients ability to perform activities of daily living. […] Monitor for complications such as respiratory infections or heart problems. […] Impaired Gas Exchange related to reduced lung volumes and decreased lung compliance. […] Activity Intolerance related to dyspnea and fatigue. […] Anxiety related to chronic disease and breathlessness. […] Knowledge Deficit regarding disease process and self-management strategies. […] Respiratory Support: Administer supplemental oxygen as prescribed and assist with non-invasive ventilation if needed. […] Rationale: To improve oxygenation and ease breathing effort. […] Patient and Family Education: Educate about disease process, progression, and self-care strategies.
#11 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Continuous monitoring of respiratory status and oxygen saturation. […] Assess for signs of respiratory distress or hypoxemia. […] Evaluate the patients ability to perform activities of daily living. […] Monitor for complications such as respiratory infections or heart problems. […] Impaired Gas Exchange related to reduced lung volumes and decreased lung compliance. […] Activity Intolerance related to dyspnea and fatigue. […] Anxiety related to chronic disease and breathlessness. […] Knowledge Deficit regarding disease process and self-management strategies. […] Respiratory Support: Administer supplemental oxygen as prescribed and assist with non-invasive ventilation if needed. […] Rationale: To improve oxygenation and ease breathing effort. […] Patient and Family Education: Educate about disease process, progression, and self-care strategies.
#12 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Continuous monitoring of respiratory status and oxygen saturation. […] Assess for signs of respiratory distress or hypoxemia. […] Evaluate the patients ability to perform activities of daily living. […] Monitor for complications such as respiratory infections or heart problems. […] Impaired Gas Exchange related to reduced lung volumes and decreased lung compliance. […] Activity Intolerance related to dyspnea and fatigue. […] Anxiety related to chronic disease and breathlessness. […] Knowledge Deficit regarding disease process and self-management strategies. […] Respiratory Support: Administer supplemental oxygen as prescribed and assist with non-invasive ventilation if needed. […] Rationale: To improve oxygenation and ease breathing effort. […] Patient and Family Education: Educate about disease process, progression, and self-care strategies.
#13 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Continuous monitoring of respiratory status and oxygen saturation. […] Assess for signs of respiratory distress or hypoxemia. […] Evaluate the patients ability to perform activities of daily living. […] Monitor for complications such as respiratory infections or heart problems. […] Impaired Gas Exchange related to reduced lung volumes and decreased lung compliance. […] Activity Intolerance related to dyspnea and fatigue. […] Anxiety related to chronic disease and breathlessness. […] Knowledge Deficit regarding disease process and self-management strategies. […] Respiratory Support: Administer supplemental oxygen as prescribed and assist with non-invasive ventilation if needed. […] Rationale: To improve oxygenation and ease breathing effort. […] Patient and Family Education: Educate about disease process, progression, and self-care strategies.
#14 Idiopathic Pulmonary Fibrosis | AAFP
https://www.aafp.org/family-physician/patient-care/care-resources/respiratory-health/idiopathic-pulmonary-fibrosis.html
Knowledge of a patients medical history and exposures is vital to diagnosing IPF and essential to excluding other ILDs. […] The physical examination should focus on two key signs: Inspiratory crackles. This sign may be the earliest clinical finding and is the hallmark feature of IPF, reported in more than 90% of patients. […] Idiopathic pulmonary fibrosis is unlikely in the presence of signs of connective tissue disease, such as joint deformity, synovitis, muscle weakness, and rash. […] The diagnosis of IPF is challenging and one of exclusion. No one clinical factor indicates IPF. Rather, a patients entire clinical context should be considered when making a diagnosis of IPF. […] Referrals should include a complete documentation of findings. Diagnosing IPF requires not only knowledge of the signs and symptoms of IPF, but also the ability to distinguish it from other diseases with similar clinical presentations.
#15 Idiopathic Pulmonary Fibrosis | AAFP
https://www.aafp.org/family-physician/patient-care/care-resources/respiratory-health/idiopathic-pulmonary-fibrosis.html
Knowledge of a patients medical history and exposures is vital to diagnosing IPF and essential to excluding other ILDs. […] The physical examination should focus on two key signs: Inspiratory crackles. This sign may be the earliest clinical finding and is the hallmark feature of IPF, reported in more than 90% of patients. […] Idiopathic pulmonary fibrosis is unlikely in the presence of signs of connective tissue disease, such as joint deformity, synovitis, muscle weakness, and rash. […] The diagnosis of IPF is challenging and one of exclusion. No one clinical factor indicates IPF. Rather, a patients entire clinical context should be considered when making a diagnosis of IPF. […] Referrals should include a complete documentation of findings. Diagnosing IPF requires not only knowledge of the signs and symptoms of IPF, but also the ability to distinguish it from other diseases with similar clinical presentations.
#16 Idiopathic Pulmonary Fibrosis | AAFP
https://www.aafp.org/family-physician/patient-care/care-resources/respiratory-health/idiopathic-pulmonary-fibrosis.html
Knowledge of a patients medical history and exposures is vital to diagnosing IPF and essential to excluding other ILDs. […] The physical examination should focus on two key signs: Inspiratory crackles. This sign may be the earliest clinical finding and is the hallmark feature of IPF, reported in more than 90% of patients. […] Idiopathic pulmonary fibrosis is unlikely in the presence of signs of connective tissue disease, such as joint deformity, synovitis, muscle weakness, and rash. […] The diagnosis of IPF is challenging and one of exclusion. No one clinical factor indicates IPF. Rather, a patients entire clinical context should be considered when making a diagnosis of IPF. […] Referrals should include a complete documentation of findings. Diagnosing IPF requires not only knowledge of the signs and symptoms of IPF, but also the ability to distinguish it from other diseases with similar clinical presentations.
#17 Pulmonary Fibrosis Nursing Diagnosis & Care Plan – NurseStudy.Net
https://nursestudy.net/pulmonary-fibrosis-nursing-diagnosis/
Nursing Diagnosis: Activity Intolerance related to imbalance between oxygen supply and demand secondary to pulmonary fibrosis as evidenced by dyspnea on exertion and fatigue with minimal activity. […] Nursing Diagnosis: Ineffective Breathing Pattern related to decreased lung compliance secondary to pulmonary fibrosis as evidenced by tachypnea, shallow breathing, and use of accessory muscles. […] Nursing Diagnosis: Anxiety related to chronic disease process and dyspnea as evidenced by expressed feelings of apprehension, restlessness, and increased respiratory rate. […] Nursing Diagnosis: Ineffective Health Management related to knowledge deficit regarding pulmonary fibrosis management as evidenced by verbalized misconceptions and non-adherence to the treatment plan.
#18 Pulmonary Fibrosis Nursing Diagnosis & Care Plan – NurseStudy.Net
https://nursestudy.net/pulmonary-fibrosis-nursing-diagnosis/
Nursing Diagnosis: Activity Intolerance related to imbalance between oxygen supply and demand secondary to pulmonary fibrosis as evidenced by dyspnea on exertion and fatigue with minimal activity. […] Nursing Diagnosis: Ineffective Breathing Pattern related to decreased lung compliance secondary to pulmonary fibrosis as evidenced by tachypnea, shallow breathing, and use of accessory muscles. […] Nursing Diagnosis: Anxiety related to chronic disease process and dyspnea as evidenced by expressed feelings of apprehension, restlessness, and increased respiratory rate. […] Nursing Diagnosis: Ineffective Health Management related to knowledge deficit regarding pulmonary fibrosis management as evidenced by verbalized misconceptions and non-adherence to the treatment plan.
#19 Pulmonary Fibrosis Nursing Diagnosis & Care Plan – NurseStudy.Net
https://nursestudy.net/pulmonary-fibrosis-nursing-diagnosis/
Pulmonary fibrosis is a chronic, progressive lung disease characterized by the formation of scar tissue in the lungs. This nursing diagnosis is crucial for healthcare providers to understand, as it guides the development of comprehensive care plans for patients with this condition. […] The first step in providing care for patients with pulmonary fibrosis is a thorough nursing assessment. […] Nursing interventions for patients with pulmonary fibrosis focus on improving oxygenation, managing symptoms, and enhancing quality of life. […] The following nursing care plans provide a framework for addressing the key nursing diagnoses associated with pulmonary fibrosis. […] Nursing Diagnosis: Impaired Gas Exchange related to alveolar-capillary membrane changes secondary to pulmonary fibrosis as evidenced by dyspnea, decreased oxygen saturation, and abnormal arterial blood gas values.
#20 Pulmonary Fibrosis Nursing Diagnosis & Care Plan – NurseStudy.Net
https://nursestudy.net/pulmonary-fibrosis-nursing-diagnosis/
Pulmonary fibrosis is a chronic, progressive lung disease characterized by the formation of scar tissue in the lungs. This nursing diagnosis is crucial for healthcare providers to understand, as it guides the development of comprehensive care plans for patients with this condition. […] The first step in providing care for patients with pulmonary fibrosis is a thorough nursing assessment. […] Nursing interventions for patients with pulmonary fibrosis focus on improving oxygenation, managing symptoms, and enhancing quality of life. […] The following nursing care plans provide a framework for addressing the key nursing diagnoses associated with pulmonary fibrosis. […] Nursing Diagnosis: Impaired Gas Exchange related to alveolar-capillary membrane changes secondary to pulmonary fibrosis as evidenced by dyspnea, decreased oxygen saturation, and abnormal arterial blood gas values.
#21 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Continuous monitoring of respiratory status and oxygen saturation. […] Assess for signs of respiratory distress or hypoxemia. […] Evaluate the patients ability to perform activities of daily living. […] Monitor for complications such as respiratory infections or heart problems. […] Impaired Gas Exchange related to reduced lung volumes and decreased lung compliance. […] Activity Intolerance related to dyspnea and fatigue. […] Anxiety related to chronic disease and breathlessness. […] Knowledge Deficit regarding disease process and self-management strategies. […] Respiratory Support: Administer supplemental oxygen as prescribed and assist with non-invasive ventilation if needed. […] Rationale: To improve oxygenation and ease breathing effort. […] Patient and Family Education: Educate about disease process, progression, and self-care strategies.
#22 Pulmonary Fibrosis Nursing Diagnosis & Care Plan – NurseStudy.Net
https://nursestudy.net/pulmonary-fibrosis-nursing-diagnosis/
Nursing Diagnosis: Activity Intolerance related to imbalance between oxygen supply and demand secondary to pulmonary fibrosis as evidenced by dyspnea on exertion and fatigue with minimal activity. […] Nursing Diagnosis: Ineffective Breathing Pattern related to decreased lung compliance secondary to pulmonary fibrosis as evidenced by tachypnea, shallow breathing, and use of accessory muscles. […] Nursing Diagnosis: Anxiety related to chronic disease process and dyspnea as evidenced by expressed feelings of apprehension, restlessness, and increased respiratory rate. […] Nursing Diagnosis: Ineffective Health Management related to knowledge deficit regarding pulmonary fibrosis management as evidenced by verbalized misconceptions and non-adherence to the treatment plan.
#23 Pulmonary Fibrosis Nursing Diagnosis & Care Plan – NurseStudy.Net
https://nursestudy.net/pulmonary-fibrosis-nursing-diagnosis/
Nursing Diagnosis: Activity Intolerance related to imbalance between oxygen supply and demand secondary to pulmonary fibrosis as evidenced by dyspnea on exertion and fatigue with minimal activity. […] Nursing Diagnosis: Ineffective Breathing Pattern related to decreased lung compliance secondary to pulmonary fibrosis as evidenced by tachypnea, shallow breathing, and use of accessory muscles. […] Nursing Diagnosis: Anxiety related to chronic disease process and dyspnea as evidenced by expressed feelings of apprehension, restlessness, and increased respiratory rate. […] Nursing Diagnosis: Ineffective Health Management related to knowledge deficit regarding pulmonary fibrosis management as evidenced by verbalized misconceptions and non-adherence to the treatment plan.
#24 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Continuous monitoring of respiratory status and oxygen saturation. […] Assess for signs of respiratory distress or hypoxemia. […] Evaluate the patients ability to perform activities of daily living. […] Monitor for complications such as respiratory infections or heart problems. […] Impaired Gas Exchange related to reduced lung volumes and decreased lung compliance. […] Activity Intolerance related to dyspnea and fatigue. […] Anxiety related to chronic disease and breathlessness. […] Knowledge Deficit regarding disease process and self-management strategies. […] Respiratory Support: Administer supplemental oxygen as prescribed and assist with non-invasive ventilation if needed. […] Rationale: To improve oxygenation and ease breathing effort. […] Patient and Family Education: Educate about disease process, progression, and self-care strategies.
#25 Pulmonary Fibrosis Nursing Diagnosis & Care Plan – NurseStudy.Net
https://nursestudy.net/pulmonary-fibrosis-nursing-diagnosis/
Nursing Diagnosis: Activity Intolerance related to imbalance between oxygen supply and demand secondary to pulmonary fibrosis as evidenced by dyspnea on exertion and fatigue with minimal activity. […] Nursing Diagnosis: Ineffective Breathing Pattern related to decreased lung compliance secondary to pulmonary fibrosis as evidenced by tachypnea, shallow breathing, and use of accessory muscles. […] Nursing Diagnosis: Anxiety related to chronic disease process and dyspnea as evidenced by expressed feelings of apprehension, restlessness, and increased respiratory rate. […] Nursing Diagnosis: Ineffective Health Management related to knowledge deficit regarding pulmonary fibrosis management as evidenced by verbalized misconceptions and non-adherence to the treatment plan.
#26 Pulmonary Fibrosis Nursing Diagnosis & Care Plan – NurseStudy.Net
https://nursestudy.net/pulmonary-fibrosis-nursing-diagnosis/
Nursing Diagnosis: Activity Intolerance related to imbalance between oxygen supply and demand secondary to pulmonary fibrosis as evidenced by dyspnea on exertion and fatigue with minimal activity. […] Nursing Diagnosis: Ineffective Breathing Pattern related to decreased lung compliance secondary to pulmonary fibrosis as evidenced by tachypnea, shallow breathing, and use of accessory muscles. […] Nursing Diagnosis: Anxiety related to chronic disease process and dyspnea as evidenced by expressed feelings of apprehension, restlessness, and increased respiratory rate. […] Nursing Diagnosis: Ineffective Health Management related to knowledge deficit regarding pulmonary fibrosis management as evidenced by verbalized misconceptions and non-adherence to the treatment plan.
#27 Pulmonary Fibrosis Nursing Diagnosis & Care Plan – NurseStudy.Net
https://nursestudy.net/pulmonary-fibrosis-nursing-diagnosis/
Pulmonary fibrosis is a chronic, progressive lung disease characterized by the formation of scar tissue in the lungs. This nursing diagnosis is crucial for healthcare providers to understand, as it guides the development of comprehensive care plans for patients with this condition. […] The first step in providing care for patients with pulmonary fibrosis is a thorough nursing assessment. […] Nursing interventions for patients with pulmonary fibrosis focus on improving oxygenation, managing symptoms, and enhancing quality of life. […] The following nursing care plans provide a framework for addressing the key nursing diagnoses associated with pulmonary fibrosis. […] Nursing Diagnosis: Impaired Gas Exchange related to alveolar-capillary membrane changes secondary to pulmonary fibrosis as evidenced by dyspnea, decreased oxygen saturation, and abnormal arterial blood gas values.
#28 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Continuous monitoring of respiratory status and oxygen saturation. […] Assess for signs of respiratory distress or hypoxemia. […] Evaluate the patients ability to perform activities of daily living. […] Monitor for complications such as respiratory infections or heart problems. […] Impaired Gas Exchange related to reduced lung volumes and decreased lung compliance. […] Activity Intolerance related to dyspnea and fatigue. […] Anxiety related to chronic disease and breathlessness. […] Knowledge Deficit regarding disease process and self-management strategies. […] Respiratory Support: Administer supplemental oxygen as prescribed and assist with non-invasive ventilation if needed. […] Rationale: To improve oxygenation and ease breathing effort. […] Patient and Family Education: Educate about disease process, progression, and self-care strategies.
#29 Pulmonary fibrosis – Diagnosis and treatment – Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/diagnosis-treatment/drc-20353695
Our caring team of Mayo Clinic experts can help you with your pulmonary fibrosis-related health concerns […] Treatment depends on the cause of your pulmonary fibrosis. Doctors and other healthcare professionals evaluate how severe your condition is. Then together you can decide on the best treatment plan. […] Pulmonary rehabilitation can help manage your symptoms and improve your ability to do daily tasks. Pulmonary rehabilitation programs focus on: Physical exercise to improve how much you can do. Breathing techniques that may improve how well your lungs use oxygen. Nutritional counseling. Emotional counseling and support. Education about your condition. […] When symptoms suddenly get worse, called an acute exacerbation, you may need more supplemental oxygen. In some cases, you may need mechanical ventilation in the hospital. In this treatment, a tube is guided into the lungs and attached to a machine that helps with breathing. Your healthcare professional may recommend antibiotics, corticosteroid medicines or other medicines when symptoms suddenly get worse.
#30 Management of idiopathic pulmonary fibrosis | Nursing Times
https://www.nursingtimes.net/respiratory/management-of-idiopathic-pulmonary-fibrosis-11-04-2014/
Idiopathic pulmonary fibrosis is a life-limiting, incurable condition. Recent guidance from NICE identifies priorities of care for this group of patients […] Given that treatment options are limited and disease progression is rapid, nurses are pivotal in the care of these patients. They have a role in providing information and support during assessment and diagnosis, throughout the treatment pathway, in symptom management and in end-of-life care. […] Nurses are crucial in providing best supportive care, which should be tailored to disease severity and rate of progression, and patient preferences from diagnosis through to end-of-life care. […] Regular assessment for exercise-induced hypoxia and prompt referral for ambulatory oxygen assessment enable patients to engage in normal activities inside and outside the home for as long as possible.
#31 The care needs of patients with idiopathic pulmonary fibrosis and their carers (CaNoPy): results of a qualitative study | BMC Pulmonary Medicine | Full Text
https://bmcpulmmed.biomedcentral.com/articles/10.1186/s12890-015-0145-5
Patients diagnosed with IPF have a clear understanding of their prognosis but little understanding of how their disease will progress and how it will be managed. […] Patients with IPF describe reduced health status, high symptom burden and impaired quality of life. […] Current guidance promotes a patient and carer centred, supportive approach coordinated by a multidisciplinary team with appropriate skill mix. […] The specialist nurse was perceived as a key resource, enabling patients and carers to access help on practical management and triggering medical intervention when required. […] Patients viewed pulmonary rehabilitation as positive intervention, enabling them to participate in the management of their own disease and improve everyday living through increased awareness of coping strategies like energy conservation and better task management.
#32 Pulmonary fibrosis – Diagnosis and treatment – Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/diagnosis-treatment/drc-20353695
Our caring team of Mayo Clinic experts can help you with your pulmonary fibrosis-related health concerns […] Treatment depends on the cause of your pulmonary fibrosis. Doctors and other healthcare professionals evaluate how severe your condition is. Then together you can decide on the best treatment plan. […] Pulmonary rehabilitation can help manage your symptoms and improve your ability to do daily tasks. Pulmonary rehabilitation programs focus on: Physical exercise to improve how much you can do. Breathing techniques that may improve how well your lungs use oxygen. Nutritional counseling. Emotional counseling and support. Education about your condition. […] When symptoms suddenly get worse, called an acute exacerbation, you may need more supplemental oxygen. In some cases, you may need mechanical ventilation in the hospital. In this treatment, a tube is guided into the lungs and attached to a machine that helps with breathing. Your healthcare professional may recommend antibiotics, corticosteroid medicines or other medicines when symptoms suddenly get worse.
#33 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
Timely discussion of treatment limitations, in terms of resuscitation and (bridgeable) ICU hospitalization, is important for preventing unwanted medical interventions. […] Given that ICU hospitalization is associated with increased mortality in all forms of PF, patients need to be informed about these possible negative consequences to make well-thought decisions. […] The principal symptoms of PF that profoundly impact patient HRQOL include dyspnea, cough, and fatigue. […] Managing these symptoms with currently available treatments remains challenging. […] The prevalence of fatigue varies among different ILDs, with an estimated prevalence of up to 95% in patients with IPF. […] It has a major impact on HRQOL but is difficult to manage and often underrecognized. […] Anxiolytics and antidepressants may be considered for managing psychological distress in patients with PF.
#34 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
Timely discussion of treatment limitations, in terms of resuscitation and (bridgeable) ICU hospitalization, is important for preventing unwanted medical interventions. […] Given that ICU hospitalization is associated with increased mortality in all forms of PF, patients need to be informed about these possible negative consequences to make well-thought decisions. […] The principal symptoms of PF that profoundly impact patient HRQOL include dyspnea, cough, and fatigue. […] Managing these symptoms with currently available treatments remains challenging. […] The prevalence of fatigue varies among different ILDs, with an estimated prevalence of up to 95% in patients with IPF. […] It has a major impact on HRQOL but is difficult to manage and often underrecognized. […] Anxiolytics and antidepressants may be considered for managing psychological distress in patients with PF.
#35 Management of Idiopathic Pulmonary Fibrosis
https://pmc.ncbi.nlm.nih.gov/articles/PMC6745766/
Overall, the prognosis for patients with IPF is poor; data collected in the United States prior to the availability of drugs that slow the progression of IPF showed that the typical survival interval after diagnosis was 3 to 5 years. […] Management of symptoms, particularly dyspnea, cough, and fatigue, is important for preserving quality of life in patients with IPF but is extremely challenging given the lack of evidence-based therapies. […] The 2011 ATS/ERS/JRS/ALAT guidelines strongly recommended the use of supplemental oxygen in patients with IPF and significant resting hypoxemia. […] These guidelines also recommend pulmonary rehabilitation as part of the management of IPF, given its potential to improve exercise capacity, dyspnea, and quality of life. […] Familiarity with this uncommon disease and its management will assist the pharmacist in caring for patients with IPF.
#36
https://www.nhs.uk/conditions/idiopathic-pulmonary-fibrosis/treatment/
There’s currently no cure for idiopathic pulmonary fibrosis (IPF). The main aim of treatment is to relieve the symptoms as much as possible and slow down its progression. […] As the condition becomes more advanced, end of life (palliative) care will be offered. […] If your condition gets worse despite taking pirfenidone and your lung capacity falls by 10% or more within a year, the medicine will usually be stopped. […] If you have any of these symptoms, then stop taking your medicine and talk to your doctor immediately. […] Nintedanib is a newer medicine that can also help slow down scarring of the lungs in some people with IPF. […] If this happens, oxygen treatment can help with your breathing and allow you to be more active. […] Pulmonary rehabilitation is used for many long-term lung conditions.
#37
https://www.nhs.uk/conditions/idiopathic-pulmonary-fibrosis/treatment/
There’s currently no cure for idiopathic pulmonary fibrosis (IPF). The main aim of treatment is to relieve the symptoms as much as possible and slow down its progression. […] As the condition becomes more advanced, end of life (palliative) care will be offered. […] If your condition gets worse despite taking pirfenidone and your lung capacity falls by 10% or more within a year, the medicine will usually be stopped. […] If you have any of these symptoms, then stop taking your medicine and talk to your doctor immediately. […] Nintedanib is a newer medicine that can also help slow down scarring of the lungs in some people with IPF. […] If this happens, oxygen treatment can help with your breathing and allow you to be more active. […] Pulmonary rehabilitation is used for many long-term lung conditions.
#38 Pulmonary fibrosis – Diagnosis and treatment – Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/diagnosis-treatment/drc-20353695
Our caring team of Mayo Clinic experts can help you with your pulmonary fibrosis-related health concerns […] Treatment depends on the cause of your pulmonary fibrosis. Doctors and other healthcare professionals evaluate how severe your condition is. Then together you can decide on the best treatment plan. […] Pulmonary rehabilitation can help manage your symptoms and improve your ability to do daily tasks. Pulmonary rehabilitation programs focus on: Physical exercise to improve how much you can do. Breathing techniques that may improve how well your lungs use oxygen. Nutritional counseling. Emotional counseling and support. Education about your condition. […] When symptoms suddenly get worse, called an acute exacerbation, you may need more supplemental oxygen. In some cases, you may need mechanical ventilation in the hospital. In this treatment, a tube is guided into the lungs and attached to a machine that helps with breathing. Your healthcare professional may recommend antibiotics, corticosteroid medicines or other medicines when symptoms suddenly get worse.
#39 Living with Pulmonary Fibrosis FAQ | American Lung Association
https://www.lung.org/lung-health-diseases/lung-disease-lookup/pulmonary-fibrosis/patients/living-well-with-pulmonary-fibrosis/living-with-pulmonary
When you are diagnosed with pulmonary fibrosis, it is normal to have many questions about what life is like living with this disease. […] If you have a question that is not answered, call our free Lung HelpLine at 1-800-LUNGUSA (1-800-586-4872). […] There is no cure for pulmonary fibrosis. People with IPF may benefit from a drug that slows the progression of the disease. Oxygen therapy and pulmonary rehabilitation are key components of maintaining a good quality of life with PF. […] Pulmonary rehab will help you stay in good physical shape which will improve your quality of life. It also offers psychosocial support, which is so important to quality of life. […] Using oxygen therapy will not make your PF worse and it is not an addictive drug. The oxygen may make you feel better and able to do more and you may prefer to be on it. […] It is important to stay active and not become sedentary. Exercise doesn’t change the fact that pulmonary fibrosis will get worse over time, but it makes a huge difference in how patients feel. […] It is recommended that pulmonary fibrosis patients live at a lower altitude. Try and avoid areas where air quality is poor. […] Talk with your doctor about your concerns and consider the potential pros and cons of moving before making a decision.
#40 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
Timely discussion of treatment limitations, in terms of resuscitation and (bridgeable) ICU hospitalization, is important for preventing unwanted medical interventions. […] Given that ICU hospitalization is associated with increased mortality in all forms of PF, patients need to be informed about these possible negative consequences to make well-thought decisions. […] The principal symptoms of PF that profoundly impact patient HRQOL include dyspnea, cough, and fatigue. […] Managing these symptoms with currently available treatments remains challenging. […] The prevalence of fatigue varies among different ILDs, with an estimated prevalence of up to 95% in patients with IPF. […] It has a major impact on HRQOL but is difficult to manage and often underrecognized. […] Anxiolytics and antidepressants may be considered for managing psychological distress in patients with PF.
#41 Management of idiopathic pulmonary fibrosis | Nursing Times
https://www.nursingtimes.net/respiratory/management-of-idiopathic-pulmonary-fibrosis-11-04-2014/
Supportive nurses are critical to helping patients adjust and develop coping strategies. […] NICE (2013a) recommends offering pulmonary rehabilitation to patients throughout their disease pathway. This should be tailored as the educational needs of IPF patients are different from those with other lung diseases such as COPD. […] Monitoring disease progression and withdrawing ineffective therapies that could cause harm or further impair the patients quality of life should be considered.
#42 Management of idiopathic pulmonary fibrosis | Nursing Times
https://www.nursingtimes.net/respiratory/management-of-idiopathic-pulmonary-fibrosis-11-04-2014/
Supportive nurses are critical to helping patients adjust and develop coping strategies. […] NICE (2013a) recommends offering pulmonary rehabilitation to patients throughout their disease pathway. This should be tailored as the educational needs of IPF patients are different from those with other lung diseases such as COPD. […] Monitoring disease progression and withdrawing ineffective therapies that could cause harm or further impair the patients quality of life should be considered.
#43 Pulmonary fibrosis – Diagnosis and treatment – Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/diagnosis-treatment/drc-20353695
Our caring team of Mayo Clinic experts can help you with your pulmonary fibrosis-related health concerns […] Treatment depends on the cause of your pulmonary fibrosis. Doctors and other healthcare professionals evaluate how severe your condition is. Then together you can decide on the best treatment plan. […] Pulmonary rehabilitation can help manage your symptoms and improve your ability to do daily tasks. Pulmonary rehabilitation programs focus on: Physical exercise to improve how much you can do. Breathing techniques that may improve how well your lungs use oxygen. Nutritional counseling. Emotional counseling and support. Education about your condition. […] When symptoms suddenly get worse, called an acute exacerbation, you may need more supplemental oxygen. In some cases, you may need mechanical ventilation in the hospital. In this treatment, a tube is guided into the lungs and attached to a machine that helps with breathing. Your healthcare professional may recommend antibiotics, corticosteroid medicines or other medicines when symptoms suddenly get worse.
#44 Pulmonary fibrosis – Diagnosis and treatment – Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/diagnosis-treatment/drc-20353695
Our caring team of Mayo Clinic experts can help you with your pulmonary fibrosis-related health concerns […] Treatment depends on the cause of your pulmonary fibrosis. Doctors and other healthcare professionals evaluate how severe your condition is. Then together you can decide on the best treatment plan. […] Pulmonary rehabilitation can help manage your symptoms and improve your ability to do daily tasks. Pulmonary rehabilitation programs focus on: Physical exercise to improve how much you can do. Breathing techniques that may improve how well your lungs use oxygen. Nutritional counseling. Emotional counseling and support. Education about your condition. […] When symptoms suddenly get worse, called an acute exacerbation, you may need more supplemental oxygen. In some cases, you may need mechanical ventilation in the hospital. In this treatment, a tube is guided into the lungs and attached to a machine that helps with breathing. Your healthcare professional may recommend antibiotics, corticosteroid medicines or other medicines when symptoms suddenly get worse.
#45 Idiopathic Pulmonary Fibrosis | AAFP
https://www.aafp.org/family-physician/patient-care/care-resources/respiratory-health/idiopathic-pulmonary-fibrosis.html
The goals of treatment are to slow progression of the disease, reduce symptoms, and improve the quality of life. IPF is currently treated with a combination of antifibrotic drugs and pulmonary rehabilitation. […] Patients with IPF should be assessed for the need for oxygen therapy. This is best accomplished by a six-minute walk study. […] In addition to their vital role in early detection and referral, family physicians play an important role in the ongoing care of their patients with IPF. Family physicians can contribute to the care of patients with IPF in the following ways: Oversee the treatment of comorbidities, Encourage participation in pulmonary rehabilitation and monitor progress, Vaccinate against influenza, pneumococcus, and pertussis, Assess emotional and mental health, Recommend support groups for patients and their caregivers, Monitor the need for oxygen therapy, Discuss treatment preferences and end-of-life care.
#46 The care needs of patients with idiopathic pulmonary fibrosis and their carers (CaNoPy): results of a qualitative study | BMC Pulmonary Medicine | Full Text
https://bmcpulmmed.biomedcentral.com/articles/10.1186/s12890-015-0145-5
Patients diagnosed with IPF have a clear understanding of their prognosis but little understanding of how their disease will progress and how it will be managed. […] Patients with IPF describe reduced health status, high symptom burden and impaired quality of life. […] Current guidance promotes a patient and carer centred, supportive approach coordinated by a multidisciplinary team with appropriate skill mix. […] The specialist nurse was perceived as a key resource, enabling patients and carers to access help on practical management and triggering medical intervention when required. […] Patients viewed pulmonary rehabilitation as positive intervention, enabling them to participate in the management of their own disease and improve everyday living through increased awareness of coping strategies like energy conservation and better task management.
#47
https://journals.lww.com/tnpj/fulltext/2018/05000/idiopathic_pulmonary_fibrosis__a_guide_for_nurse.9.aspx
Patient education and self-management are critical to help patients with IPF manage their disease and make decisions regarding their care. Patients frequently require support with coming to terms with an IPF diagnosis and coping with the challenges associated with the disease. […] In addition to drug therapy, symptom relief and supportive care are important elements of IPF management. Common issues healthcare providers face when treating patients include dyspnea, cough, fatigue, and depression, which are often difficult to manage.
#48
https://www.nursingcenter.com/cearticle?an=00152193-202101000-00007&Journal_ID=54016&Issue_ID=5737721
Idiopathic pulmonary fibrosis (IPF) is a restrictive lung disease in which the cause cannot be determined. This article discusses restrictive lung diseases that fall under the general category of interstitial lung disease (ILD) with a focus on IPF-a fatal disease characterized by progressive fibrosis and interstitial pneumonia, dyspnea, and decreasing pulmonary function. […] The intent of this article is to provide nurses with a better understanding of the overall disorder and care needed for people who have been diagnosed with a restrictive lung disease, particularly IPF. […] Management goals for patients with ILD and IPF include slowing the fibrotic process and relieving the patient’s dyspnea. […] Nursing care for patients like AC includes educating the patient and family about the disease process and recommending community resources for support. Education should include strategies for avoiding respiratory irritants such as dust, mold, and animal dander; performing optimal hand hygiene practices; and preventing respiratory infections by avoiding crowds and people who are sick. […] Palliative care should be considered early in the disease process. Discussing expectations and wishes for end-of-life care can help patients improve their mental outlook and decrease the stress on both patients and the families.
#49
https://www.nursingcenter.com/cearticle?an=00152193-202101000-00007&Journal_ID=54016&Issue_ID=5737721
Idiopathic pulmonary fibrosis (IPF) is a restrictive lung disease in which the cause cannot be determined. This article discusses restrictive lung diseases that fall under the general category of interstitial lung disease (ILD) with a focus on IPF-a fatal disease characterized by progressive fibrosis and interstitial pneumonia, dyspnea, and decreasing pulmonary function. […] The intent of this article is to provide nurses with a better understanding of the overall disorder and care needed for people who have been diagnosed with a restrictive lung disease, particularly IPF. […] Management goals for patients with ILD and IPF include slowing the fibrotic process and relieving the patient’s dyspnea. […] Nursing care for patients like AC includes educating the patient and family about the disease process and recommending community resources for support. Education should include strategies for avoiding respiratory irritants such as dust, mold, and animal dander; performing optimal hand hygiene practices; and preventing respiratory infections by avoiding crowds and people who are sick. […] Palliative care should be considered early in the disease process. Discussing expectations and wishes for end-of-life care can help patients improve their mental outlook and decrease the stress on both patients and the families.
#50
https://www.nursingcenter.com/cearticle?an=00152193-202101000-00007&Journal_ID=54016&Issue_ID=5737721
Idiopathic pulmonary fibrosis (IPF) is a restrictive lung disease in which the cause cannot be determined. This article discusses restrictive lung diseases that fall under the general category of interstitial lung disease (ILD) with a focus on IPF-a fatal disease characterized by progressive fibrosis and interstitial pneumonia, dyspnea, and decreasing pulmonary function. […] The intent of this article is to provide nurses with a better understanding of the overall disorder and care needed for people who have been diagnosed with a restrictive lung disease, particularly IPF. […] Management goals for patients with ILD and IPF include slowing the fibrotic process and relieving the patient’s dyspnea. […] Nursing care for patients like AC includes educating the patient and family about the disease process and recommending community resources for support. Education should include strategies for avoiding respiratory irritants such as dust, mold, and animal dander; performing optimal hand hygiene practices; and preventing respiratory infections by avoiding crowds and people who are sick. […] Palliative care should be considered early in the disease process. Discussing expectations and wishes for end-of-life care can help patients improve their mental outlook and decrease the stress on both patients and the families.
#51
https://www.nursingcenter.com/cearticle?an=00152193-202101000-00007&Journal_ID=54016&Issue_ID=5737721
Idiopathic pulmonary fibrosis (IPF) is a restrictive lung disease in which the cause cannot be determined. This article discusses restrictive lung diseases that fall under the general category of interstitial lung disease (ILD) with a focus on IPF-a fatal disease characterized by progressive fibrosis and interstitial pneumonia, dyspnea, and decreasing pulmonary function. […] The intent of this article is to provide nurses with a better understanding of the overall disorder and care needed for people who have been diagnosed with a restrictive lung disease, particularly IPF. […] Management goals for patients with ILD and IPF include slowing the fibrotic process and relieving the patient’s dyspnea. […] Nursing care for patients like AC includes educating the patient and family about the disease process and recommending community resources for support. Education should include strategies for avoiding respiratory irritants such as dust, mold, and animal dander; performing optimal hand hygiene practices; and preventing respiratory infections by avoiding crowds and people who are sick. […] Palliative care should be considered early in the disease process. Discussing expectations and wishes for end-of-life care can help patients improve their mental outlook and decrease the stress on both patients and the families.
#52 Pulmonary Fibrosis: Causes, Symptoms & Treatment
https://my.clevelandclinic.org/health/diseases/10959-pulmonary-fibrosis
Idiopathic pulmonary fibrosis is lung scarring without a known cause. Most cases of pulmonary fibrosis are idiopathic. […] No, there isn’t a cure for pulmonary fibrosis. Treatment focuses on easing symptoms, slowing down progression, and improving your quality of life. […] If you have a PF diagnosis, it might be harder to fight off or recover from infections. Washing your hands frequently, disinfecting surfaces and avoiding crowded places especially during cold and flu season, and when COVID-19 cases are high might help you avoid getting sick frequently. […] Talk to a healthcare provider if you have shortness of breath or get tired more easily with everyday tasks than you used to. Early diagnosis and treatment can help slow down the progression of lung disease. […] Many causes of pulmonary fibrosis aren’t preventable. You can reduce your risk of lung scarring from environmental exposures by avoiding substances that can harm your lungs, such as asbestos, metal dust or chemicals, and wearing a respirator if you have to work with them.
#53 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Continuous monitoring of respiratory status and oxygen saturation. […] Assess for signs of respiratory distress or hypoxemia. […] Evaluate the patients ability to perform activities of daily living. […] Monitor for complications such as respiratory infections or heart problems. […] Impaired Gas Exchange related to reduced lung volumes and decreased lung compliance. […] Activity Intolerance related to dyspnea and fatigue. […] Anxiety related to chronic disease and breathlessness. […] Knowledge Deficit regarding disease process and self-management strategies. […] Respiratory Support: Administer supplemental oxygen as prescribed and assist with non-invasive ventilation if needed. […] Rationale: To improve oxygenation and ease breathing effort. […] Patient and Family Education: Educate about disease process, progression, and self-care strategies.
#54
https://journals.lww.com/tnpj/fulltext/2018/05000/idiopathic_pulmonary_fibrosis__a_guide_for_nurse.9.aspx
Patient education and self-management are critical to help patients with IPF manage their disease and make decisions regarding their care. Patients frequently require support with coming to terms with an IPF diagnosis and coping with the challenges associated with the disease. […] In addition to drug therapy, symptom relief and supportive care are important elements of IPF management. Common issues healthcare providers face when treating patients include dyspnea, cough, fatigue, and depression, which are often difficult to manage.
#55 Management of idiopathic pulmonary fibrosis | Nursing Times
https://www.nursingtimes.net/respiratory/management-of-idiopathic-pulmonary-fibrosis-11-04-2014/
Supportive nurses are critical to helping patients adjust and develop coping strategies. […] NICE (2013a) recommends offering pulmonary rehabilitation to patients throughout their disease pathway. This should be tailored as the educational needs of IPF patients are different from those with other lung diseases such as COPD. […] Monitoring disease progression and withdrawing ineffective therapies that could cause harm or further impair the patients quality of life should be considered.
#56 Pulmonary fibrosis – Diagnosis and treatment – Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/diagnosis-treatment/drc-20353695
Our caring team of Mayo Clinic experts can help you with your pulmonary fibrosis-related health concerns […] Treatment depends on the cause of your pulmonary fibrosis. Doctors and other healthcare professionals evaluate how severe your condition is. Then together you can decide on the best treatment plan. […] Pulmonary rehabilitation can help manage your symptoms and improve your ability to do daily tasks. Pulmonary rehabilitation programs focus on: Physical exercise to improve how much you can do. Breathing techniques that may improve how well your lungs use oxygen. Nutritional counseling. Emotional counseling and support. Education about your condition. […] When symptoms suddenly get worse, called an acute exacerbation, you may need more supplemental oxygen. In some cases, you may need mechanical ventilation in the hospital. In this treatment, a tube is guided into the lungs and attached to a machine that helps with breathing. Your healthcare professional may recommend antibiotics, corticosteroid medicines or other medicines when symptoms suddenly get worse.
#57
https://journals.lww.com/tnpj/fulltext/2018/05000/idiopathic_pulmonary_fibrosis__a_guide_for_nurse.9.aspx
Patient education and self-management are critical to help patients with IPF manage their disease and make decisions regarding their care. Patients frequently require support with coming to terms with an IPF diagnosis and coping with the challenges associated with the disease. […] In addition to drug therapy, symptom relief and supportive care are important elements of IPF management. Common issues healthcare providers face when treating patients include dyspnea, cough, fatigue, and depression, which are often difficult to manage.
#58 Idiopathic Pulmonary Fibrosis | AAFP
https://www.aafp.org/family-physician/patient-care/care-resources/respiratory-health/idiopathic-pulmonary-fibrosis.html
The goals of treatment are to slow progression of the disease, reduce symptoms, and improve the quality of life. IPF is currently treated with a combination of antifibrotic drugs and pulmonary rehabilitation. […] Patients with IPF should be assessed for the need for oxygen therapy. This is best accomplished by a six-minute walk study. […] In addition to their vital role in early detection and referral, family physicians play an important role in the ongoing care of their patients with IPF. Family physicians can contribute to the care of patients with IPF in the following ways: Oversee the treatment of comorbidities, Encourage participation in pulmonary rehabilitation and monitor progress, Vaccinate against influenza, pneumococcus, and pertussis, Assess emotional and mental health, Recommend support groups for patients and their caregivers, Monitor the need for oxygen therapy, Discuss treatment preferences and end-of-life care.
#59 Idiopathic Pulmonary Fibrosis | AAFP
https://www.aafp.org/family-physician/patient-care/care-resources/respiratory-health/idiopathic-pulmonary-fibrosis.html
The goals of treatment are to slow progression of the disease, reduce symptoms, and improve the quality of life. IPF is currently treated with a combination of antifibrotic drugs and pulmonary rehabilitation. […] Patients with IPF should be assessed for the need for oxygen therapy. This is best accomplished by a six-minute walk study. […] In addition to their vital role in early detection and referral, family physicians play an important role in the ongoing care of their patients with IPF. Family physicians can contribute to the care of patients with IPF in the following ways: Oversee the treatment of comorbidities, Encourage participation in pulmonary rehabilitation and monitor progress, Vaccinate against influenza, pneumococcus, and pertussis, Assess emotional and mental health, Recommend support groups for patients and their caregivers, Monitor the need for oxygen therapy, Discuss treatment preferences and end-of-life care.
#60 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
Non-pharmacological strategies for managing psychological impairment include patient counseling, cognitive behavioral therapy, and peer support group participation. […] To our knowledge, no studies have investigated the effects of antidepressants on psychological distress in patients with PF. […] Many patients with IPF have a worse prognosis than those with lung cancer, end-of-life care is far less developed in this area, with less symptom relief achieved in IPF. […] Timely conversations about the place of dying will allow patients to die surrounded by their family and in their chosen setting. […] In conclusion, we believe that routinely addressing the domains of the Triple A Care model in clinical practice can improve the adoption of a more individually tailored approach to PF care.
#61
https://www.nursingcenter.com/cearticle?an=00152193-202101000-00007&Journal_ID=54016&Issue_ID=5737721
Idiopathic pulmonary fibrosis (IPF) is a restrictive lung disease in which the cause cannot be determined. This article discusses restrictive lung diseases that fall under the general category of interstitial lung disease (ILD) with a focus on IPF-a fatal disease characterized by progressive fibrosis and interstitial pneumonia, dyspnea, and decreasing pulmonary function. […] The intent of this article is to provide nurses with a better understanding of the overall disorder and care needed for people who have been diagnosed with a restrictive lung disease, particularly IPF. […] Management goals for patients with ILD and IPF include slowing the fibrotic process and relieving the patient’s dyspnea. […] Nursing care for patients like AC includes educating the patient and family about the disease process and recommending community resources for support. Education should include strategies for avoiding respiratory irritants such as dust, mold, and animal dander; performing optimal hand hygiene practices; and preventing respiratory infections by avoiding crowds and people who are sick. […] Palliative care should be considered early in the disease process. Discussing expectations and wishes for end-of-life care can help patients improve their mental outlook and decrease the stress on both patients and the families.
#62
https://www.nursingcenter.com/cearticle?an=00152193-202101000-00007&Journal_ID=54016&Issue_ID=5737721
Idiopathic pulmonary fibrosis (IPF) is a restrictive lung disease in which the cause cannot be determined. This article discusses restrictive lung diseases that fall under the general category of interstitial lung disease (ILD) with a focus on IPF-a fatal disease characterized by progressive fibrosis and interstitial pneumonia, dyspnea, and decreasing pulmonary function. […] The intent of this article is to provide nurses with a better understanding of the overall disorder and care needed for people who have been diagnosed with a restrictive lung disease, particularly IPF. […] Management goals for patients with ILD and IPF include slowing the fibrotic process and relieving the patient’s dyspnea. […] Nursing care for patients like AC includes educating the patient and family about the disease process and recommending community resources for support. Education should include strategies for avoiding respiratory irritants such as dust, mold, and animal dander; performing optimal hand hygiene practices; and preventing respiratory infections by avoiding crowds and people who are sick. […] Palliative care should be considered early in the disease process. Discussing expectations and wishes for end-of-life care can help patients improve their mental outlook and decrease the stress on both patients and the families.
#63 Idiopathic Pulmonary Fibrosis (IPF) Treatment & Management: Approach Considerations, Medical Care, Surgical Care
https://emedicine.medscape.com/article/301226-treatment
Early palliative care referral is recommended as an adjunct to disease-focused care in idiopathic pulmonary fibrosis (IPF). The UK National Institute for Health and Care Excellence defines palliative care in terms of patient and care-giver involvement, psychological support, symptom management and control, and spiritual support.
#64 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
The key identified needs are increasing disease awareness and disease-specific education, early and accurate diagnosis, access to specialized centers, access to antifibrotic treatment, a focus on symptom-based management, clinical trial access, and psychological support. […] In daily practice, extensive needs assessment may be pressured by time constraints. […] Furthermore, caregivers also have unmet needs and should be supported with proper strategies, including educational programs and social and psychological support. […] Palliative care aims to improve HRQOL for patients and their caregivers throughout the disease course, which is particularly relevant in PF due to the high disease burden and often progressive disease course. […] As many people interpret palliative care as end-of-life care, careful explanation or the use of alternative wording, such as supportive care, may be used to avoid causing unnecessary worries in patients and families.
#65 End of life with pulmonary fibrosis | Action for Pulmonary Fibrosis
https://www.actionpf.org/information-support/end-of-life
You may wish to consider end-of-life care. Many patients find this very beneficial as it provides help managing your physical symptoms as well as emotional support for you and your family. End-of-life care can be delivered in different places including in your home, in hospital, in a care home or nursing home, and in a hospice. […] You may also need specialist nursing care with toileting or eating. You can get advice from your palliative care team or hospice.
#66 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
The key identified needs are increasing disease awareness and disease-specific education, early and accurate diagnosis, access to specialized centers, access to antifibrotic treatment, a focus on symptom-based management, clinical trial access, and psychological support. […] In daily practice, extensive needs assessment may be pressured by time constraints. […] Furthermore, caregivers also have unmet needs and should be supported with proper strategies, including educational programs and social and psychological support. […] Palliative care aims to improve HRQOL for patients and their caregivers throughout the disease course, which is particularly relevant in PF due to the high disease burden and often progressive disease course. […] As many people interpret palliative care as end-of-life care, careful explanation or the use of alternative wording, such as supportive care, may be used to avoid causing unnecessary worries in patients and families.
#67 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
Timely discussion of treatment limitations, in terms of resuscitation and (bridgeable) ICU hospitalization, is important for preventing unwanted medical interventions. […] Given that ICU hospitalization is associated with increased mortality in all forms of PF, patients need to be informed about these possible negative consequences to make well-thought decisions. […] The principal symptoms of PF that profoundly impact patient HRQOL include dyspnea, cough, and fatigue. […] Managing these symptoms with currently available treatments remains challenging. […] The prevalence of fatigue varies among different ILDs, with an estimated prevalence of up to 95% in patients with IPF. […] It has a major impact on HRQOL but is difficult to manage and often underrecognized. […] Anxiolytics and antidepressants may be considered for managing psychological distress in patients with PF.
#68 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
Timely discussion of treatment limitations, in terms of resuscitation and (bridgeable) ICU hospitalization, is important for preventing unwanted medical interventions. […] Given that ICU hospitalization is associated with increased mortality in all forms of PF, patients need to be informed about these possible negative consequences to make well-thought decisions. […] The principal symptoms of PF that profoundly impact patient HRQOL include dyspnea, cough, and fatigue. […] Managing these symptoms with currently available treatments remains challenging. […] The prevalence of fatigue varies among different ILDs, with an estimated prevalence of up to 95% in patients with IPF. […] It has a major impact on HRQOL but is difficult to manage and often underrecognized. […] Anxiolytics and antidepressants may be considered for managing psychological distress in patients with PF.
#69 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
Non-pharmacological strategies for managing psychological impairment include patient counseling, cognitive behavioral therapy, and peer support group participation. […] To our knowledge, no studies have investigated the effects of antidepressants on psychological distress in patients with PF. […] Many patients with IPF have a worse prognosis than those with lung cancer, end-of-life care is far less developed in this area, with less symptom relief achieved in IPF. […] Timely conversations about the place of dying will allow patients to die surrounded by their family and in their chosen setting. […] In conclusion, we believe that routinely addressing the domains of the Triple A Care model in clinical practice can improve the adoption of a more individually tailored approach to PF care.
#70 End of life with pulmonary fibrosis | Action for Pulmonary Fibrosis
https://www.actionpf.org/information-support/end-of-life
You may wish to consider end-of-life care. Many patients find this very beneficial as it provides help managing your physical symptoms as well as emotional support for you and your family. End-of-life care can be delivered in different places including in your home, in hospital, in a care home or nursing home, and in a hospice. […] You may also need specialist nursing care with toileting or eating. You can get advice from your palliative care team or hospice.
#71 Idiopathic pulmonary fibrosis – UF Health
https://ufhealth.org/conditions-and-treatments/idiopathic-pulmonary-fibrosis
Idiopathic pulmonary fibrosis (IPF) is scarring or thickening of the lungs without a known cause. […] Treatment is aimed at relieving symptoms and slowing disease progression: […] Lung rehabilitation will not cure the disease, but it can help people exercise with less difficulty breathing. […] Making home and lifestyle changes can help manage breathing symptoms. If you or any family members smoke, now is the time to stop. […] A lung transplant may be considered for some people with advanced IPF. […] You can ease the stress of illness by joining a support group. Sharing with others who have common experiences and problems can help you not feel alone. […] When breathing symptoms become more severe, you and your provider should discuss treatments that prolong life, such as lung transplantation. Also discuss advance care planning. […] Contact your provider right away if you have any of the following: […] Need to lean forward when sitting to breathe comfortably.
#72 Pulmonary fibrosis – Diagnosis and treatment – Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/diagnosis-treatment/drc-20353695
A lung transplant may be an option for some people with pulmonary fibrosis. Having a lung transplant can improve your quality of life and allow you to live a longer life. But a lung transplant can involve complications such as rejection and infection. After a lung transplant, you take medicines for the rest of your life. You and your healthcare team may discuss a lung transplant if it’s thought to be the right treatment option for your condition. […] Follow your treatment plan. You usually need ongoing treatment from your healthcare team. Follow the care team’s instructions. Take your medicines as prescribed. Adjust your diet and exercise as needed. Attend pulmonary rehabilitation sessions. Go to all of your appointments and contact your care team if symptoms worsen.
#73 Idiopathic Pulmonary Fibrosis – StatPearls – NCBI Bookshelf
https://www.ncbi.nlm.nih.gov/books/NBK448162/
Implement evidence-based diagnostic algorithms to facilitate timely diagnosis and management of idiopathic pulmonary fibrosis. […] Apply appropriate treatment modalities based on individual patient needs and disease stage, including antifibrotic medications and supportive measures. […] Collaborate with multidisciplinary healthcare teams to provide comprehensive care, optimize long-term management, and improve the quality of life for patients living with idiopathic pulmonary fibrosis. […] PFTs are recommended every 3 to 6 months, which should be performed based on symptoms and the disease’s progression. […] Recommended supportive measures include tobacco cessation, oxygen supplementation, and pulmonary rehabilitation. […] Antifibrotic medications, including pirfenidone and nintedanib (tyrosine kinase inhibitors), are approved for use in IPF. […] Referral for a lung transplant is recommended early in the course of the disease, particularly for patients experiencing a progressive decline in lung function. […] Palliative care with a focus on progressive end-stage IPF is highly advised.
#74 Idiopathic pulmonary fibrosis: What primary care physicians need to know | Cleveland Clinic Journal of Medicine
https://www.ccjm.org/content/85/5/377
Accurate diagnosis of IPF is crucial. We recommend early referral to a center specializing in interstitial lung disease to confirm the diagnosis, start appropriate therapy, advise the patient on prognosis and enrollment in disease registries and clinical trials, and determine candidacy for lung transplant. […] The goal of this article is to delineate the features of IPF so that it may be recognized early and thus expedite referral to a center with expertise in interstitial lung disease for a thorough evaluation and appropriate management. […] Antifibrotic therapy is a choice between pirfenidone and nintedanib. […] Patients need to understand that these drugs slow the rate of decline in FVC but have not been shown to improve symptoms or functional status. […] Corticosteroids should not be used routinely in the treatment of IPF. […] Their use in IPF is discouraged, and the joint international guidelines recommend against immunosuppression to treat IPF. […] Prompt referral for lung transplant is imperative. IPF is now the most common indication for lung transplant, and given the poor overall prognosis of advanced IPF, transplant confers a survival benefit in appropriately selected patients.
#75 Guidelines for the Medical Treatment of Idiopathic Pulmonary Fibrosis | Archivos de BronconeumologÃa
https://www.archbronconeumol.org/en-guidelines-for-medical-treatment-idiopathic-articulo-S1579212917300782
When a diagnosis of IPF has been established, antifibrotic medication should begin as soon as possible in order to delay functional decline that would occur without treatment. In asymptomatic patients with minimal functional or radiological impact, a wait-and-see approach can be taken, after the risks and benefits of such a strategy have been weighed up. […] Treatment should be administered for 12 months, and should be continued if the disease improves or stabilizes. If it worsens, each patient should be evaluated to determine if continuing treatment is advisable or if other therapeutic strategies should be adopted. Patients with poor prognosis on diagnosis or with rapidly progressing disease should be referred to lung transplantation units. Patients on transplant waiting lists should continue their antifibrotic treatment, since this has been shown to reduce disease progression and does not increase the incidence of post-transplantation complications.
#76 Management of idiopathic pulmonary fibrosis | Nursing Times
https://www.nursingtimes.net/respiratory/management-of-idiopathic-pulmonary-fibrosis-11-04-2014/
Idiopathic pulmonary fibrosis is a life-limiting, incurable condition. Recent guidance from NICE identifies priorities of care for this group of patients […] Given that treatment options are limited and disease progression is rapid, nurses are pivotal in the care of these patients. They have a role in providing information and support during assessment and diagnosis, throughout the treatment pathway, in symptom management and in end-of-life care. […] Nurses are crucial in providing best supportive care, which should be tailored to disease severity and rate of progression, and patient preferences from diagnosis through to end-of-life care. […] Regular assessment for exercise-induced hypoxia and prompt referral for ambulatory oxygen assessment enable patients to engage in normal activities inside and outside the home for as long as possible.
#77 Care planning in idiopathic pulmonary fibrosis | Nursing Times
https://www.nursingtimes.net/respiratory/care-planning-in-idiopathic-pulmonary-fibrosis-27-04-2015/
Idiopathic pulmonary fibrosis is a progressive lung disorder requiring careful management in partnership with patients to slow its progress and optimise quality of life […] Patients with idiopathic pulmonary fibrosis require accurate diagnosis and treatment to improve their quality of life and prognosis. […] ILD clinical nurse specialists have a valuable role in helping patients to understand their diagnosis and uncertain prognosis, and to offer information about investigations and management. A CNS should be available throughout the care pathway. […] The CNS is integral to the multidisciplinary team in the care of patients with IPF. The landscape for the care of these patients has changed rapidly with the emergence of new therapies, and clinical trials continue. However, non-pharmacological management remains challenging due to the lack of evidence. The time for nurse-led research has never been better. […] The progressive nature of IPF means care should be shared between specialist and local services.
#78 Care planning in idiopathic pulmonary fibrosis | Nursing Times
https://www.nursingtimes.net/respiratory/care-planning-in-idiopathic-pulmonary-fibrosis-27-04-2015/
Idiopathic pulmonary fibrosis is a progressive lung disorder requiring careful management in partnership with patients to slow its progress and optimise quality of life […] Patients with idiopathic pulmonary fibrosis require accurate diagnosis and treatment to improve their quality of life and prognosis. […] ILD clinical nurse specialists have a valuable role in helping patients to understand their diagnosis and uncertain prognosis, and to offer information about investigations and management. A CNS should be available throughout the care pathway. […] The CNS is integral to the multidisciplinary team in the care of patients with IPF. The landscape for the care of these patients has changed rapidly with the emergence of new therapies, and clinical trials continue. However, non-pharmacological management remains challenging due to the lack of evidence. The time for nurse-led research has never been better. […] The progressive nature of IPF means care should be shared between specialist and local services.
#79 The care needs of patients with idiopathic pulmonary fibrosis and their carers (CaNoPy): results of a qualitative study | BMC Pulmonary Medicine | Full Text
https://bmcpulmmed.biomedcentral.com/articles/10.1186/s12890-015-0145-5
Patients diagnosed with IPF have a clear understanding of their prognosis but little understanding of how their disease will progress and how it will be managed. […] Patients with IPF describe reduced health status, high symptom burden and impaired quality of life. […] Current guidance promotes a patient and carer centred, supportive approach coordinated by a multidisciplinary team with appropriate skill mix. […] The specialist nurse was perceived as a key resource, enabling patients and carers to access help on practical management and triggering medical intervention when required. […] Patients viewed pulmonary rehabilitation as positive intervention, enabling them to participate in the management of their own disease and improve everyday living through increased awareness of coping strategies like energy conservation and better task management.
#80 Care planning in idiopathic pulmonary fibrosis | Nursing Times
https://www.nursingtimes.net/respiratory/care-planning-in-idiopathic-pulmonary-fibrosis-27-04-2015/
Idiopathic pulmonary fibrosis is a progressive lung disorder requiring careful management in partnership with patients to slow its progress and optimise quality of life […] Patients with idiopathic pulmonary fibrosis require accurate diagnosis and treatment to improve their quality of life and prognosis. […] ILD clinical nurse specialists have a valuable role in helping patients to understand their diagnosis and uncertain prognosis, and to offer information about investigations and management. A CNS should be available throughout the care pathway. […] The CNS is integral to the multidisciplinary team in the care of patients with IPF. The landscape for the care of these patients has changed rapidly with the emergence of new therapies, and clinical trials continue. However, non-pharmacological management remains challenging due to the lack of evidence. The time for nurse-led research has never been better. […] The progressive nature of IPF means care should be shared between specialist and local services.
#81 ILD Nurses Home | PulmonaryFibrosis360.com
https://www.pulmonaryfibrosis360.com/nurses
Nurses have a key role in supporting patients throughout their journey with fibrotic ILD, as well as facilitating and coordinating multidisciplinary care. […] Nurses play a key communication role within a multidisciplinary team in educating patients and their caregivers. […] Holistic supportive care can help aid symptom relief, physical and emotional wellbeing for patients with fibrotic ILD. […] Highlighting the potential roles of nurses in supporting patients and caregivers throughout their journey with fibrotic ILD.
#82 Care planning in idiopathic pulmonary fibrosis | Nursing Times
https://www.nursingtimes.net/respiratory/care-planning-in-idiopathic-pulmonary-fibrosis-27-04-2015/
Idiopathic pulmonary fibrosis is a progressive lung disorder requiring careful management in partnership with patients to slow its progress and optimise quality of life […] Patients with idiopathic pulmonary fibrosis require accurate diagnosis and treatment to improve their quality of life and prognosis. […] ILD clinical nurse specialists have a valuable role in helping patients to understand their diagnosis and uncertain prognosis, and to offer information about investigations and management. A CNS should be available throughout the care pathway. […] The CNS is integral to the multidisciplinary team in the care of patients with IPF. The landscape for the care of these patients has changed rapidly with the emergence of new therapies, and clinical trials continue. However, non-pharmacological management remains challenging due to the lack of evidence. The time for nurse-led research has never been better. […] The progressive nature of IPF means care should be shared between specialist and local services.
#83 ILD Nurses Home | PulmonaryFibrosis360.com
https://www.pulmonaryfibrosis360.com/nurses
Nurses have a key role in supporting patients throughout their journey with fibrotic ILD, as well as facilitating and coordinating multidisciplinary care. […] Nurses play a key communication role within a multidisciplinary team in educating patients and their caregivers. […] Holistic supportive care can help aid symptom relief, physical and emotional wellbeing for patients with fibrotic ILD. […] Highlighting the potential roles of nurses in supporting patients and caregivers throughout their journey with fibrotic ILD.
#84 Care planning in idiopathic pulmonary fibrosis | Nursing Times
https://www.nursingtimes.net/respiratory/care-planning-in-idiopathic-pulmonary-fibrosis-27-04-2015/
Idiopathic pulmonary fibrosis is a progressive lung disorder requiring careful management in partnership with patients to slow its progress and optimise quality of life […] Patients with idiopathic pulmonary fibrosis require accurate diagnosis and treatment to improve their quality of life and prognosis. […] ILD clinical nurse specialists have a valuable role in helping patients to understand their diagnosis and uncertain prognosis, and to offer information about investigations and management. A CNS should be available throughout the care pathway. […] The CNS is integral to the multidisciplinary team in the care of patients with IPF. The landscape for the care of these patients has changed rapidly with the emergence of new therapies, and clinical trials continue. However, non-pharmacological management remains challenging due to the lack of evidence. The time for nurse-led research has never been better. […] The progressive nature of IPF means care should be shared between specialist and local services.
#85 Management of idiopathic pulmonary fibrosis | Nursing Times
https://www.nursingtimes.net/respiratory/management-of-idiopathic-pulmonary-fibrosis-11-04-2014/
Idiopathic pulmonary fibrosis is a life-limiting, incurable condition. Recent guidance from NICE identifies priorities of care for this group of patients […] Given that treatment options are limited and disease progression is rapid, nurses are pivotal in the care of these patients. They have a role in providing information and support during assessment and diagnosis, throughout the treatment pathway, in symptom management and in end-of-life care. […] Nurses are crucial in providing best supportive care, which should be tailored to disease severity and rate of progression, and patient preferences from diagnosis through to end-of-life care. […] Regular assessment for exercise-induced hypoxia and prompt referral for ambulatory oxygen assessment enable patients to engage in normal activities inside and outside the home for as long as possible.
#86 Management of idiopathic pulmonary fibrosis | Nursing Times
https://www.nursingtimes.net/respiratory/management-of-idiopathic-pulmonary-fibrosis-11-04-2014/
Supportive nurses are critical to helping patients adjust and develop coping strategies. […] NICE (2013a) recommends offering pulmonary rehabilitation to patients throughout their disease pathway. This should be tailored as the educational needs of IPF patients are different from those with other lung diseases such as COPD. […] Monitoring disease progression and withdrawing ineffective therapies that could cause harm or further impair the patients quality of life should be considered.
#87 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
Comprehensive care integrates individual patient needs and is highly valued for patients with pulmonary fibrosis (PF). The importance of a patient-centered care approach is rooted in the unpredictable progressiveness of the disease course in PF. The respiratory impairment associated with PF has a major impact on the quality of life for both patients and their caregivers. […] We believe that prioritizing patient preferences could improve the shared decision making process and may ultimately lead to better health outcomes. […] Despite the growing emphasis for this approach, it remains challenging to adopt it in clinical practice. […] In this review, we propose the comprehensive Triple A Care Model, consisting of the domains Access, Anticipate, and Act, which emphasizes core elements of patient-centered care for patients with PF.
#88 The care needs of patients with idiopathic pulmonary fibrosis and their carers (CaNoPy): results of a qualitative study | BMC Pulmonary Medicine | Full Text
https://bmcpulmmed.biomedcentral.com/articles/10.1186/s12890-015-0145-5
Patients diagnosed with IPF have a clear understanding of their prognosis but little understanding of how their disease will progress and how it will be managed. […] Patients with IPF describe reduced health status, high symptom burden and impaired quality of life. […] Current guidance promotes a patient and carer centred, supportive approach coordinated by a multidisciplinary team with appropriate skill mix. […] The specialist nurse was perceived as a key resource, enabling patients and carers to access help on practical management and triggering medical intervention when required. […] Patients viewed pulmonary rehabilitation as positive intervention, enabling them to participate in the management of their own disease and improve everyday living through increased awareness of coping strategies like energy conservation and better task management.
#89 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
Comprehensive care integrates individual patient needs and is highly valued for patients with pulmonary fibrosis (PF). The importance of a patient-centered care approach is rooted in the unpredictable progressiveness of the disease course in PF. The respiratory impairment associated with PF has a major impact on the quality of life for both patients and their caregivers. […] We believe that prioritizing patient preferences could improve the shared decision making process and may ultimately lead to better health outcomes. […] Despite the growing emphasis for this approach, it remains challenging to adopt it in clinical practice. […] In this review, we propose the comprehensive Triple A Care Model, consisting of the domains Access, Anticipate, and Act, which emphasizes core elements of patient-centered care for patients with PF.
#90 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
Comprehensive care integrates individual patient needs and is highly valued for patients with pulmonary fibrosis (PF). The importance of a patient-centered care approach is rooted in the unpredictable progressiveness of the disease course in PF. The respiratory impairment associated with PF has a major impact on the quality of life for both patients and their caregivers. […] We believe that prioritizing patient preferences could improve the shared decision making process and may ultimately lead to better health outcomes. […] Despite the growing emphasis for this approach, it remains challenging to adopt it in clinical practice. […] In this review, we propose the comprehensive Triple A Care Model, consisting of the domains Access, Anticipate, and Act, which emphasizes core elements of patient-centered care for patients with PF.
#91
https://lettersinhighenergyphysics.com/index.php/LHEP/article/view/1108
Idiopathic Pulmonary Fibrosis (IPF) is a progressive lung disease characterized by the accumulation of fibrous tissue in the lungs, leading to diminished lung function and quality of life. Effective nursing care strategies for patients with IPF are essential in managing symptoms, promoting engagement in care, and ensuring comprehensive support. One critical approach is education about the disease process, encouraging patients to understand their condition, recognize symptoms, and adhere to treatment plans. Nurses can implement structured education sessions that include information about the importance of medication compliance, techniques for energy conservation, and nutritional guidance to help maintain overall health. […] Another vital nursing care strategy involves facilitating respiratory support and therapy initiatives tailored to improve patients’ pulmonary function. This may include coordinating pulmonary rehabilitation programs that focus on physical exercise, breathing techniques, and oxygen therapy when necessary. Nurses play a key role in monitoring patients respiratory status, assessing for exacerbations, and managing medications such as corticosteroids or antifibrotic agents. Providing psychological and emotional support also remains crucial; nurses can offer referrals to mental health professionals or support groups to address the emotional burden of IPF. Furthermore, developing a comprehensive discharge plan that includes resources for home care, follow-up appointments, and community support can significantly help patients manage their condition effectively and enhance their independence.
#92 Pulmonary fibrosis – Diagnosis and treatment – Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/diagnosis-treatment/drc-20353695
A lung transplant may be an option for some people with pulmonary fibrosis. Having a lung transplant can improve your quality of life and allow you to live a longer life. But a lung transplant can involve complications such as rejection and infection. After a lung transplant, you take medicines for the rest of your life. You and your healthcare team may discuss a lung transplant if it’s thought to be the right treatment option for your condition. […] Follow your treatment plan. You usually need ongoing treatment from your healthcare team. Follow the care team’s instructions. Take your medicines as prescribed. Adjust your diet and exercise as needed. Attend pulmonary rehabilitation sessions. Go to all of your appointments and contact your care team if symptoms worsen.
#93 Pulmonary Fibrosis: Causes, Symptoms & Treatment
https://my.clevelandclinic.org/health/diseases/10959-pulmonary-fibrosis
Idiopathic pulmonary fibrosis is lung scarring without a known cause. Most cases of pulmonary fibrosis are idiopathic. […] No, there isn’t a cure for pulmonary fibrosis. Treatment focuses on easing symptoms, slowing down progression, and improving your quality of life. […] If you have a PF diagnosis, it might be harder to fight off or recover from infections. Washing your hands frequently, disinfecting surfaces and avoiding crowded places especially during cold and flu season, and when COVID-19 cases are high might help you avoid getting sick frequently. […] Talk to a healthcare provider if you have shortness of breath or get tired more easily with everyday tasks than you used to. Early diagnosis and treatment can help slow down the progression of lung disease. […] Many causes of pulmonary fibrosis aren’t preventable. You can reduce your risk of lung scarring from environmental exposures by avoiding substances that can harm your lungs, such as asbestos, metal dust or chemicals, and wearing a respirator if you have to work with them.
#94 Living with Pulmonary Fibrosis FAQ | American Lung Association
https://www.lung.org/lung-health-diseases/lung-disease-lookup/pulmonary-fibrosis/patients/living-well-with-pulmonary-fibrosis/living-with-pulmonary
When you are diagnosed with pulmonary fibrosis, it is normal to have many questions about what life is like living with this disease. […] If you have a question that is not answered, call our free Lung HelpLine at 1-800-LUNGUSA (1-800-586-4872). […] There is no cure for pulmonary fibrosis. People with IPF may benefit from a drug that slows the progression of the disease. Oxygen therapy and pulmonary rehabilitation are key components of maintaining a good quality of life with PF. […] Pulmonary rehab will help you stay in good physical shape which will improve your quality of life. It also offers psychosocial support, which is so important to quality of life. […] Using oxygen therapy will not make your PF worse and it is not an addictive drug. The oxygen may make you feel better and able to do more and you may prefer to be on it. […] It is important to stay active and not become sedentary. Exercise doesn’t change the fact that pulmonary fibrosis will get worse over time, but it makes a huge difference in how patients feel. […] It is recommended that pulmonary fibrosis patients live at a lower altitude. Try and avoid areas where air quality is poor. […] Talk with your doctor about your concerns and consider the potential pros and cons of moving before making a decision.
#95 Living with Pulmonary Fibrosis FAQ | American Lung Association
https://www.lung.org/lung-health-diseases/lung-disease-lookup/pulmonary-fibrosis/patients/living-well-with-pulmonary-fibrosis/living-with-pulmonary
When you are diagnosed with pulmonary fibrosis, it is normal to have many questions about what life is like living with this disease. […] If you have a question that is not answered, call our free Lung HelpLine at 1-800-LUNGUSA (1-800-586-4872). […] There is no cure for pulmonary fibrosis. People with IPF may benefit from a drug that slows the progression of the disease. Oxygen therapy and pulmonary rehabilitation are key components of maintaining a good quality of life with PF. […] Pulmonary rehab will help you stay in good physical shape which will improve your quality of life. It also offers psychosocial support, which is so important to quality of life. […] Using oxygen therapy will not make your PF worse and it is not an addictive drug. The oxygen may make you feel better and able to do more and you may prefer to be on it. […] It is important to stay active and not become sedentary. Exercise doesn’t change the fact that pulmonary fibrosis will get worse over time, but it makes a huge difference in how patients feel. […] It is recommended that pulmonary fibrosis patients live at a lower altitude. Try and avoid areas where air quality is poor. […] Talk with your doctor about your concerns and consider the potential pros and cons of moving before making a decision.
#96
https://lettersinhighenergyphysics.com/index.php/LHEP/article/view/1108
Idiopathic Pulmonary Fibrosis (IPF) is a progressive lung disease characterized by the accumulation of fibrous tissue in the lungs, leading to diminished lung function and quality of life. Effective nursing care strategies for patients with IPF are essential in managing symptoms, promoting engagement in care, and ensuring comprehensive support. One critical approach is education about the disease process, encouraging patients to understand their condition, recognize symptoms, and adhere to treatment plans. Nurses can implement structured education sessions that include information about the importance of medication compliance, techniques for energy conservation, and nutritional guidance to help maintain overall health. […] Another vital nursing care strategy involves facilitating respiratory support and therapy initiatives tailored to improve patients’ pulmonary function. This may include coordinating pulmonary rehabilitation programs that focus on physical exercise, breathing techniques, and oxygen therapy when necessary. Nurses play a key role in monitoring patients respiratory status, assessing for exacerbations, and managing medications such as corticosteroids or antifibrotic agents. Providing psychological and emotional support also remains crucial; nurses can offer referrals to mental health professionals or support groups to address the emotional burden of IPF. Furthermore, developing a comprehensive discharge plan that includes resources for home care, follow-up appointments, and community support can significantly help patients manage their condition effectively and enhance their independence.
#97
https://lettersinhighenergyphysics.com/index.php/LHEP/article/view/1108
Idiopathic Pulmonary Fibrosis (IPF) is a progressive lung disease characterized by the accumulation of fibrous tissue in the lungs, leading to diminished lung function and quality of life. Effective nursing care strategies for patients with IPF are essential in managing symptoms, promoting engagement in care, and ensuring comprehensive support. One critical approach is education about the disease process, encouraging patients to understand their condition, recognize symptoms, and adhere to treatment plans. Nurses can implement structured education sessions that include information about the importance of medication compliance, techniques for energy conservation, and nutritional guidance to help maintain overall health. […] Another vital nursing care strategy involves facilitating respiratory support and therapy initiatives tailored to improve patients’ pulmonary function. This may include coordinating pulmonary rehabilitation programs that focus on physical exercise, breathing techniques, and oxygen therapy when necessary. Nurses play a key role in monitoring patients respiratory status, assessing for exacerbations, and managing medications such as corticosteroids or antifibrotic agents. Providing psychological and emotional support also remains crucial; nurses can offer referrals to mental health professionals or support groups to address the emotional burden of IPF. Furthermore, developing a comprehensive discharge plan that includes resources for home care, follow-up appointments, and community support can significantly help patients manage their condition effectively and enhance their independence.
#98
https://lettersinhighenergyphysics.com/index.php/LHEP/article/view/1108
Idiopathic Pulmonary Fibrosis (IPF) is a progressive lung disease characterized by the accumulation of fibrous tissue in the lungs, leading to diminished lung function and quality of life. Effective nursing care strategies for patients with IPF are essential in managing symptoms, promoting engagement in care, and ensuring comprehensive support. One critical approach is education about the disease process, encouraging patients to understand their condition, recognize symptoms, and adhere to treatment plans. Nurses can implement structured education sessions that include information about the importance of medication compliance, techniques for energy conservation, and nutritional guidance to help maintain overall health. […] Another vital nursing care strategy involves facilitating respiratory support and therapy initiatives tailored to improve patients’ pulmonary function. This may include coordinating pulmonary rehabilitation programs that focus on physical exercise, breathing techniques, and oxygen therapy when necessary. Nurses play a key role in monitoring patients respiratory status, assessing for exacerbations, and managing medications such as corticosteroids or antifibrotic agents. Providing psychological and emotional support also remains crucial; nurses can offer referrals to mental health professionals or support groups to address the emotional burden of IPF. Furthermore, developing a comprehensive discharge plan that includes resources for home care, follow-up appointments, and community support can significantly help patients manage their condition effectively and enhance their independence.
#99
https://lettersinhighenergyphysics.com/index.php/LHEP/article/view/1108
Idiopathic Pulmonary Fibrosis (IPF) is a progressive lung disease characterized by the accumulation of fibrous tissue in the lungs, leading to diminished lung function and quality of life. Effective nursing care strategies for patients with IPF are essential in managing symptoms, promoting engagement in care, and ensuring comprehensive support. One critical approach is education about the disease process, encouraging patients to understand their condition, recognize symptoms, and adhere to treatment plans. Nurses can implement structured education sessions that include information about the importance of medication compliance, techniques for energy conservation, and nutritional guidance to help maintain overall health. […] Another vital nursing care strategy involves facilitating respiratory support and therapy initiatives tailored to improve patients’ pulmonary function. This may include coordinating pulmonary rehabilitation programs that focus on physical exercise, breathing techniques, and oxygen therapy when necessary. Nurses play a key role in monitoring patients respiratory status, assessing for exacerbations, and managing medications such as corticosteroids or antifibrotic agents. Providing psychological and emotional support also remains crucial; nurses can offer referrals to mental health professionals or support groups to address the emotional burden of IPF. Furthermore, developing a comprehensive discharge plan that includes resources for home care, follow-up appointments, and community support can significantly help patients manage their condition effectively and enhance their independence.
#100 The care needs of patients with idiopathic pulmonary fibrosis and their carers (CaNoPy): results of a qualitative study | BMC Pulmonary Medicine | Full Text
https://bmcpulmmed.biomedcentral.com/articles/10.1186/s12890-015-0145-5
Patients diagnosed with IPF have a clear understanding of their prognosis but little understanding of how their disease will progress and how it will be managed. […] Patients with IPF describe reduced health status, high symptom burden and impaired quality of life. […] Current guidance promotes a patient and carer centred, supportive approach coordinated by a multidisciplinary team with appropriate skill mix. […] The specialist nurse was perceived as a key resource, enabling patients and carers to access help on practical management and triggering medical intervention when required. […] Patients viewed pulmonary rehabilitation as positive intervention, enabling them to participate in the management of their own disease and improve everyday living through increased awareness of coping strategies like energy conservation and better task management.
#101
https://lettersinhighenergyphysics.com/index.php/LHEP/article/view/1108
Idiopathic Pulmonary Fibrosis (IPF) is a progressive lung disease characterized by the accumulation of fibrous tissue in the lungs, leading to diminished lung function and quality of life. Effective nursing care strategies for patients with IPF are essential in managing symptoms, promoting engagement in care, and ensuring comprehensive support. One critical approach is education about the disease process, encouraging patients to understand their condition, recognize symptoms, and adhere to treatment plans. Nurses can implement structured education sessions that include information about the importance of medication compliance, techniques for energy conservation, and nutritional guidance to help maintain overall health. […] Another vital nursing care strategy involves facilitating respiratory support and therapy initiatives tailored to improve patients’ pulmonary function. This may include coordinating pulmonary rehabilitation programs that focus on physical exercise, breathing techniques, and oxygen therapy when necessary. Nurses play a key role in monitoring patients respiratory status, assessing for exacerbations, and managing medications such as corticosteroids or antifibrotic agents. Providing psychological and emotional support also remains crucial; nurses can offer referrals to mental health professionals or support groups to address the emotional burden of IPF. Furthermore, developing a comprehensive discharge plan that includes resources for home care, follow-up appointments, and community support can significantly help patients manage their condition effectively and enhance their independence.
#102 Pulmonary fibrosis – Diagnosis and treatment – Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/diagnosis-treatment/drc-20353695
A lung transplant may be an option for some people with pulmonary fibrosis. Having a lung transplant can improve your quality of life and allow you to live a longer life. But a lung transplant can involve complications such as rejection and infection. After a lung transplant, you take medicines for the rest of your life. You and your healthcare team may discuss a lung transplant if it’s thought to be the right treatment option for your condition. […] Follow your treatment plan. You usually need ongoing treatment from your healthcare team. Follow the care team’s instructions. Take your medicines as prescribed. Adjust your diet and exercise as needed. Attend pulmonary rehabilitation sessions. Go to all of your appointments and contact your care team if symptoms worsen.
#103 Idiopathic pulmonary fibrosis – UF Health
https://ufhealth.org/conditions-and-treatments/idiopathic-pulmonary-fibrosis
Idiopathic pulmonary fibrosis (IPF) is scarring or thickening of the lungs without a known cause. […] Treatment is aimed at relieving symptoms and slowing disease progression: […] Lung rehabilitation will not cure the disease, but it can help people exercise with less difficulty breathing. […] Making home and lifestyle changes can help manage breathing symptoms. If you or any family members smoke, now is the time to stop. […] A lung transplant may be considered for some people with advanced IPF. […] You can ease the stress of illness by joining a support group. Sharing with others who have common experiences and problems can help you not feel alone. […] When breathing symptoms become more severe, you and your provider should discuss treatments that prolong life, such as lung transplantation. Also discuss advance care planning. […] Contact your provider right away if you have any of the following: […] Need to lean forward when sitting to breathe comfortably.
#104 Idiopathic pulmonary fibrosis – UF Health
https://ufhealth.org/conditions-and-treatments/idiopathic-pulmonary-fibrosis
Idiopathic pulmonary fibrosis (IPF) is scarring or thickening of the lungs without a known cause. […] Treatment is aimed at relieving symptoms and slowing disease progression: […] Lung rehabilitation will not cure the disease, but it can help people exercise with less difficulty breathing. […] Making home and lifestyle changes can help manage breathing symptoms. If you or any family members smoke, now is the time to stop. […] A lung transplant may be considered for some people with advanced IPF. […] You can ease the stress of illness by joining a support group. Sharing with others who have common experiences and problems can help you not feel alone. […] When breathing symptoms become more severe, you and your provider should discuss treatments that prolong life, such as lung transplantation. Also discuss advance care planning. […] Contact your provider right away if you have any of the following: […] Need to lean forward when sitting to breathe comfortably.
#105 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
The key identified needs are increasing disease awareness and disease-specific education, early and accurate diagnosis, access to specialized centers, access to antifibrotic treatment, a focus on symptom-based management, clinical trial access, and psychological support. […] In daily practice, extensive needs assessment may be pressured by time constraints. […] Furthermore, caregivers also have unmet needs and should be supported with proper strategies, including educational programs and social and psychological support. […] Palliative care aims to improve HRQOL for patients and their caregivers throughout the disease course, which is particularly relevant in PF due to the high disease burden and often progressive disease course. […] As many people interpret palliative care as end-of-life care, careful explanation or the use of alternative wording, such as supportive care, may be used to avoid causing unnecessary worries in patients and families.
#106
https://www.pulmonaryfibrosis.org/patients-caregivers/medical-and-support-resources/for-the-caregiver
Whether you are a spouse, partner, child, or friend, caring for someone who is living with a serious illness is a challenge. The role of a caregiver includes two essential responsibilities: Do what needs to be done each day to take care of your loved one. […] The Pulmonary Fibrosis Foundation’s newest resource „Caregiving for a Patient with Pulmonary Fibrosis: A Guide for Family and Friends” may help you to be a more effective caregiver while learning how to care for yourself at the same time. […] Be actively involved in your loved ones medical treatment. […] Help your loved one maintain a healthy diet and exercise program. […] Let your loved one do everything they can for as long as possible. […] Help prevent respiratory infections. […] Learn about Advance Directives like Living Wills and Medical Power of Attorney, Physician Orders for Life-Sustaining Therapy (POLST), and palliative care options, long before they seem to be needed. […] Ask for help if you need it. Accept help when it is offered.
#107
https://www.pulmonaryfibrosis.org/patients-caregivers/medical-and-support-resources/for-the-caregiver
Whether you are a spouse, partner, child, or friend, caring for someone who is living with a serious illness is a challenge. The role of a caregiver includes two essential responsibilities: Do what needs to be done each day to take care of your loved one. […] The Pulmonary Fibrosis Foundation’s newest resource „Caregiving for a Patient with Pulmonary Fibrosis: A Guide for Family and Friends” may help you to be a more effective caregiver while learning how to care for yourself at the same time. […] Be actively involved in your loved ones medical treatment. […] Help your loved one maintain a healthy diet and exercise program. […] Let your loved one do everything they can for as long as possible. […] Help prevent respiratory infections. […] Learn about Advance Directives like Living Wills and Medical Power of Attorney, Physician Orders for Life-Sustaining Therapy (POLST), and palliative care options, long before they seem to be needed. […] Ask for help if you need it. Accept help when it is offered.
#108
https://www.pulmonaryfibrosis.org/patients-caregivers/medical-and-support-resources/for-the-caregiver
Whether you are a spouse, partner, child, or friend, caring for someone who is living with a serious illness is a challenge. The role of a caregiver includes two essential responsibilities: Do what needs to be done each day to take care of your loved one. […] The Pulmonary Fibrosis Foundation’s newest resource „Caregiving for a Patient with Pulmonary Fibrosis: A Guide for Family and Friends” may help you to be a more effective caregiver while learning how to care for yourself at the same time. […] Be actively involved in your loved ones medical treatment. […] Help your loved one maintain a healthy diet and exercise program. […] Let your loved one do everything they can for as long as possible. […] Help prevent respiratory infections. […] Learn about Advance Directives like Living Wills and Medical Power of Attorney, Physician Orders for Life-Sustaining Therapy (POLST), and palliative care options, long before they seem to be needed. […] Ask for help if you need it. Accept help when it is offered.
#109
https://www.pulmonaryfibrosis.org/patients-caregivers/medical-and-support-resources/for-the-caregiver
Whether you are a spouse, partner, child, or friend, caring for someone who is living with a serious illness is a challenge. The role of a caregiver includes two essential responsibilities: Do what needs to be done each day to take care of your loved one. […] The Pulmonary Fibrosis Foundation’s newest resource „Caregiving for a Patient with Pulmonary Fibrosis: A Guide for Family and Friends” may help you to be a more effective caregiver while learning how to care for yourself at the same time. […] Be actively involved in your loved ones medical treatment. […] Help your loved one maintain a healthy diet and exercise program. […] Let your loved one do everything they can for as long as possible. […] Help prevent respiratory infections. […] Learn about Advance Directives like Living Wills and Medical Power of Attorney, Physician Orders for Life-Sustaining Therapy (POLST), and palliative care options, long before they seem to be needed. […] Ask for help if you need it. Accept help when it is offered.
#110
https://www.pulmonaryfibrosis.org/patients-caregivers/medical-and-support-resources/for-the-caregiver
Whether you are a spouse, partner, child, or friend, caring for someone who is living with a serious illness is a challenge. The role of a caregiver includes two essential responsibilities: Do what needs to be done each day to take care of your loved one. […] The Pulmonary Fibrosis Foundation’s newest resource „Caregiving for a Patient with Pulmonary Fibrosis: A Guide for Family and Friends” may help you to be a more effective caregiver while learning how to care for yourself at the same time. […] Be actively involved in your loved ones medical treatment. […] Help your loved one maintain a healthy diet and exercise program. […] Let your loved one do everything they can for as long as possible. […] Help prevent respiratory infections. […] Learn about Advance Directives like Living Wills and Medical Power of Attorney, Physician Orders for Life-Sustaining Therapy (POLST), and palliative care options, long before they seem to be needed. […] Ask for help if you need it. Accept help when it is offered.
#111
https://www.pulmonaryfibrosis.org/patients-caregivers/medical-and-support-resources/for-the-caregiver
Whether you are a spouse, partner, child, or friend, caring for someone who is living with a serious illness is a challenge. The role of a caregiver includes two essential responsibilities: Do what needs to be done each day to take care of your loved one. […] The Pulmonary Fibrosis Foundation’s newest resource „Caregiving for a Patient with Pulmonary Fibrosis: A Guide for Family and Friends” may help you to be a more effective caregiver while learning how to care for yourself at the same time. […] Be actively involved in your loved ones medical treatment. […] Help your loved one maintain a healthy diet and exercise program. […] Let your loved one do everything they can for as long as possible. […] Help prevent respiratory infections. […] Learn about Advance Directives like Living Wills and Medical Power of Attorney, Physician Orders for Life-Sustaining Therapy (POLST), and palliative care options, long before they seem to be needed. […] Ask for help if you need it. Accept help when it is offered.
#112 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Rationale: To enhance understanding and promote effective self-management. […] Monitor for improved or stable respiratory function. […] Assess for effectiveness of symptom management strategies. […] Evaluate the patients and familys understanding of the disease and self-care practices. […] Monitor for complications or worsening of the condition.
#113 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Rationale: To enhance understanding and promote effective self-management. […] Monitor for improved or stable respiratory function. […] Assess for effectiveness of symptom management strategies. […] Evaluate the patients and familys understanding of the disease and self-care practices. […] Monitor for complications or worsening of the condition.
#114 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Rationale: To enhance understanding and promote effective self-management. […] Monitor for improved or stable respiratory function. […] Assess for effectiveness of symptom management strategies. […] Evaluate the patients and familys understanding of the disease and self-care practices. […] Monitor for complications or worsening of the condition.
#115 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Rationale: To enhance understanding and promote effective self-management. […] Monitor for improved or stable respiratory function. […] Assess for effectiveness of symptom management strategies. […] Evaluate the patients and familys understanding of the disease and self-care practices. […] Monitor for complications or worsening of the condition.
#116 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Rationale: To enhance understanding and promote effective self-management. […] Monitor for improved or stable respiratory function. […] Assess for effectiveness of symptom management strategies. […] Evaluate the patients and familys understanding of the disease and self-care practices. […] Monitor for complications or worsening of the condition.
#117 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Upon completion of this nursing care plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders), nursing students will be able to: […] Provide comprehensive nursing care for patients with restrictive lung diseases, focusing on understanding the pathophysiology, etiology, and management of conditions such as pulmonary fibrosis and neuromuscular disorders affecting the lungs. […] This plan emphasizes the importance of respiratory support, symptom management, and patient education to enhance quality of life. […] Maintenance of optimal respiratory function. […] Effective management of symptoms like shortness of breath and fatigue. […] Enhanced ability to perform activities of daily living. […] Patient and family education about disease progression and management.
#118 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Upon completion of this nursing care plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders), nursing students will be able to: […] Provide comprehensive nursing care for patients with restrictive lung diseases, focusing on understanding the pathophysiology, etiology, and management of conditions such as pulmonary fibrosis and neuromuscular disorders affecting the lungs. […] This plan emphasizes the importance of respiratory support, symptom management, and patient education to enhance quality of life. […] Maintenance of optimal respiratory function. […] Effective management of symptoms like shortness of breath and fatigue. […] Enhanced ability to perform activities of daily living. […] Patient and family education about disease progression and management.
#119 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Upon completion of this nursing care plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders), nursing students will be able to: […] Provide comprehensive nursing care for patients with restrictive lung diseases, focusing on understanding the pathophysiology, etiology, and management of conditions such as pulmonary fibrosis and neuromuscular disorders affecting the lungs. […] This plan emphasizes the importance of respiratory support, symptom management, and patient education to enhance quality of life. […] Maintenance of optimal respiratory function. […] Effective management of symptoms like shortness of breath and fatigue. […] Enhanced ability to perform activities of daily living. […] Patient and family education about disease progression and management.
#120 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Upon completion of this nursing care plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders), nursing students will be able to: […] Provide comprehensive nursing care for patients with restrictive lung diseases, focusing on understanding the pathophysiology, etiology, and management of conditions such as pulmonary fibrosis and neuromuscular disorders affecting the lungs. […] This plan emphasizes the importance of respiratory support, symptom management, and patient education to enhance quality of life. […] Maintenance of optimal respiratory function. […] Effective management of symptoms like shortness of breath and fatigue. […] Enhanced ability to perform activities of daily living. […] Patient and family education about disease progression and management.
#121 Nursing Care Plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders) | Free NURSING.com Courses
https://nursing.com/lesson/nursing-care-plan-for-restrictive-lung-diseases-pulmonary-fibrosis-neuromuscular-disorders
Upon completion of this nursing care plan for Restrictive Lung Diseases (Pulmonary Fibrosis, Neuromuscular Disorders), nursing students will be able to: […] Provide comprehensive nursing care for patients with restrictive lung diseases, focusing on understanding the pathophysiology, etiology, and management of conditions such as pulmonary fibrosis and neuromuscular disorders affecting the lungs. […] This plan emphasizes the importance of respiratory support, symptom management, and patient education to enhance quality of life. […] Maintenance of optimal respiratory function. […] Effective management of symptoms like shortness of breath and fatigue. […] Enhanced ability to perform activities of daily living. […] Patient and family education about disease progression and management.
#122 A cross-sectional evaluation of the idiopathic pulmonary fibrosis patient satisfaction and quality of life with a care coordinator – Hambly – Journal of Thoracic Disease
https://jtd.amegroups.org/article/view/33941/html
Background: Canadian and international guidelines recommend specialized, multidisciplinary teams for the treatment of patients with idiopathic pulmonary fibrosis (IPF). The objective of this cross-sectional clinical study was to investigate the effect of a care coordinator on IPF patient satisfaction and quality of life. […] Conclusions: Reliance upon a coordinator during routine management of IPF patients may improve patient satisfaction, spare physician time and lead to annual cost-savings. Future studies should examine the impact of a coordinator on healthcare resource utilization. […] The primary objective of this cross-sectional study was to evaluate the impact of a coordinator on IPF patient satisfaction and HRQoL. The secondary objective was to assess the economic impact of including a coordinator in the management of IPF patients at the FIRH.
#123 A cross-sectional evaluation of the idiopathic pulmonary fibrosis patient satisfaction and quality of life with a care coordinator – Hambly – Journal of Thoracic Disease
https://jtd.amegroups.org/article/view/33941/html
Patient satisfaction was assessed through the modified FAMCARE-13 (FAMCARE) survey and the modified IPF Care UK Patient Support Program (UK-CARE) survey. […] Patients in both clinics were highly satisfied with their overall care, care provided by the physician and care provided by the coordinator, as assessed by the FAMCARE survey. […] Among HCU clinic patients, the UK-CARE survey showed a tendency towards greater satisfaction, and a significant increase in satisfaction when comparing care before and after joining the IPF clinic. […] This study demonstrates the considerable time-commitment required for the provision of care to IPF patients. At the FIRH, the coordinator was estimated to allow for an additional 313 IPF patient visits per year. Our analyses suggest that inclusion of a coordinator in the routine management of IPF patients may result in cost-savings to institutions and potentially the Canadian healthcare system.
#124 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
We will provide an overview of the unmet needs in care for patients with PF and elaborate on the current methods for delivering patient-centered care. […] The latest insights into symptom management and supportive measures and several approaches to improving access to care are discussed, in line with the most recent guidelines. […] Patient-centered care in patients with PF encompasses many facets, each with its own set of nuances and potential barriers to integration. […] We propose the Triple A Care Model for patient-centered care in pulmonary fibrosis, Access, Anticipate, and Act. […] This model serves as a tool to deliver personalized care. […] We believe that by routinely identifying patients needs and evaluating whether the topics of the three domains of the model are targeted, PF care can be optimized.
#125 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
This model can help raise awareness of the importance of holistic care for patients with PF. […] Access refers to raising PF awareness among clinicians and the general public and adopting of eHealth technologies, thereby providing early access to specialized centers, information and education, and clinical trial options. […] Anticipate encompasses continuous assessment of patient needs, preventive measures, disease monitoring, and advance care planning (ACP). […] Finally, the Act domain focusses on the timely initiation of disease-modifying treatment and symptom relief, early evaluation for lung transplantation (LTx), and promptly adopting end-of-life care. […] Optimizing patient-centered care is not possible without understanding the needs of patients and their caregivers. […] Patient needs should be the central focus and anticipated at every stage of care.
#126 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
This model can help raise awareness of the importance of holistic care for patients with PF. […] Access refers to raising PF awareness among clinicians and the general public and adopting of eHealth technologies, thereby providing early access to specialized centers, information and education, and clinical trial options. […] Anticipate encompasses continuous assessment of patient needs, preventive measures, disease monitoring, and advance care planning (ACP). […] Finally, the Act domain focusses on the timely initiation of disease-modifying treatment and symptom relief, early evaluation for lung transplantation (LTx), and promptly adopting end-of-life care. […] Optimizing patient-centered care is not possible without understanding the needs of patients and their caregivers. […] Patient needs should be the central focus and anticipated at every stage of care.
#127 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
This model can help raise awareness of the importance of holistic care for patients with PF. […] Access refers to raising PF awareness among clinicians and the general public and adopting of eHealth technologies, thereby providing early access to specialized centers, information and education, and clinical trial options. […] Anticipate encompasses continuous assessment of patient needs, preventive measures, disease monitoring, and advance care planning (ACP). […] Finally, the Act domain focusses on the timely initiation of disease-modifying treatment and symptom relief, early evaluation for lung transplantation (LTx), and promptly adopting end-of-life care. […] Optimizing patient-centered care is not possible without understanding the needs of patients and their caregivers. […] Patient needs should be the central focus and anticipated at every stage of care.
#128 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
Comprehensive care integrates individual patient needs and is highly valued for patients with pulmonary fibrosis (PF). The importance of a patient-centered care approach is rooted in the unpredictable progressiveness of the disease course in PF. The respiratory impairment associated with PF has a major impact on the quality of life for both patients and their caregivers. […] We believe that prioritizing patient preferences could improve the shared decision making process and may ultimately lead to better health outcomes. […] Despite the growing emphasis for this approach, it remains challenging to adopt it in clinical practice. […] In this review, we propose the comprehensive Triple A Care Model, consisting of the domains Access, Anticipate, and Act, which emphasizes core elements of patient-centered care for patients with PF.
#129 British Journal of Nursing – Idiopathic pulmonary fibrosis: a more common condition than you may think
https://www.britishjournalofnursing.com/content/professional/idiopathic-pulmonary-fibrosis-a-more-common-condition-than-you-may-think/
Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive incurable lung disease that affects a significant amount of people in the UK. […] Many health professionals have a limited understanding of IPF, which can result in a delayed diagnosis and inadequate care for individuals and their families. […] This article aims to provide an overview of IPF and help to enhance health professionals’ understanding of the disease, thus contributing towards improving the care that IPF sufferers receive. […] This article is timely as a reminder to nurses of the condition and to help consider the specific care and support that this patient group needs to be offered.
#130 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
The key identified needs are increasing disease awareness and disease-specific education, early and accurate diagnosis, access to specialized centers, access to antifibrotic treatment, a focus on symptom-based management, clinical trial access, and psychological support. […] In daily practice, extensive needs assessment may be pressured by time constraints. […] Furthermore, caregivers also have unmet needs and should be supported with proper strategies, including educational programs and social and psychological support. […] Palliative care aims to improve HRQOL for patients and their caregivers throughout the disease course, which is particularly relevant in PF due to the high disease burden and often progressive disease course. […] As many people interpret palliative care as end-of-life care, careful explanation or the use of alternative wording, such as supportive care, may be used to avoid causing unnecessary worries in patients and families.
#131 Referral to pulmonary rehabilitation and palliative care services in people with idiopathic pulmonary fibrosis in England, 2010â2019 | npj Primary Care Respiratory Medicine
https://www.nature.com/articles/s41533-024-00387-6
The benefits of pulmonary rehabilitation (PR) and palliative care (PC) as non-pharmacological therapies for people with idiopathic pulmonary fibrosis (IPF) are increasingly being recognised but in the UK the proportion of people with this life-limiting condition who are referred to such services is thought to be low. […] While 12.0% of IPF patients were offered a referral to PR, less than 2% completed a PR programme. Around a fifth (19.4%) received a referral to generic PC support services; however, this is well below reported PC referral rates for lung cancer patients. […] These findings confirm that PR and PC service provision for people with IPF across England is suboptimal. […] Despite growing evidence of benefit, especially in terms of patient-centred outcomes and quality of life, PR and PC service provision is believed to be poor among people with IPF, with referral rates typically much lower than those for other respiratory conditions such as lung cancer and COPD.
#132 Referral to pulmonary rehabilitation and palliative care services in people with idiopathic pulmonary fibrosis in England, 2010â2019 | npj Primary Care Respiratory Medicine
https://www.nature.com/articles/s41533-024-00387-6
The benefits of pulmonary rehabilitation (PR) and palliative care (PC) as non-pharmacological therapies for people with idiopathic pulmonary fibrosis (IPF) are increasingly being recognised but in the UK the proportion of people with this life-limiting condition who are referred to such services is thought to be low. […] While 12.0% of IPF patients were offered a referral to PR, less than 2% completed a PR programme. Around a fifth (19.4%) received a referral to generic PC support services; however, this is well below reported PC referral rates for lung cancer patients. […] These findings confirm that PR and PC service provision for people with IPF across England is suboptimal. […] Despite growing evidence of benefit, especially in terms of patient-centred outcomes and quality of life, PR and PC service provision is believed to be poor among people with IPF, with referral rates typically much lower than those for other respiratory conditions such as lung cancer and COPD.
#133 Referral to pulmonary rehabilitation and palliative care services in people with idiopathic pulmonary fibrosis in England, 2010â2019 | npj Primary Care Respiratory Medicine
https://www.nature.com/articles/s41533-024-00387-6
Our study provides confirmation of a widely-held perception that among the IPF patient population, PR and PC referral rates are extremely low. Out of a study population comprising 17,071 people registered at GP practices across England and diagnosed with IPF during the 10-year period 2010-2019, only 12% were considered for and/or offered a PR referral during follow up. […] The percentage receiving a referral to PC support services was higher, but at around 20% is significantly below the 75% reported for cancer patients. […] Moreover, the majority of PC referrals were late; among those who died, 31% were referred only within a month of death, and 70% within 6 months. […] We also identified several factors that were associated with non-referral; for PR the most significant factors were female sex, older age and co-diagnosis of dementia. In the case of PC, the most significant barriers to referral were being female or being of Asian or Black ethnicity.
#134 Referral to pulmonary rehabilitation and palliative care services in people with idiopathic pulmonary fibrosis in England, 2010â2019 | npj Primary Care Respiratory Medicine
https://www.nature.com/articles/s41533-024-00387-6
Our study provides confirmation of a widely-held perception that among the IPF patient population, PR and PC referral rates are extremely low. Out of a study population comprising 17,071 people registered at GP practices across England and diagnosed with IPF during the 10-year period 2010-2019, only 12% were considered for and/or offered a PR referral during follow up. […] The percentage receiving a referral to PC support services was higher, but at around 20% is significantly below the 75% reported for cancer patients. […] Moreover, the majority of PC referrals were late; among those who died, 31% were referred only within a month of death, and 70% within 6 months. […] We also identified several factors that were associated with non-referral; for PR the most significant factors were female sex, older age and co-diagnosis of dementia. In the case of PC, the most significant barriers to referral were being female or being of Asian or Black ethnicity.
#135 British Journal of Nursing – Idiopathic pulmonary fibrosis: a more common condition than you may think
https://www.britishjournalofnursing.com/content/professional/idiopathic-pulmonary-fibrosis-a-more-common-condition-than-you-may-think/
Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive incurable lung disease that affects a significant amount of people in the UK. […] Many health professionals have a limited understanding of IPF, which can result in a delayed diagnosis and inadequate care for individuals and their families. […] This article aims to provide an overview of IPF and help to enhance health professionals’ understanding of the disease, thus contributing towards improving the care that IPF sufferers receive. […] This article is timely as a reminder to nurses of the condition and to help consider the specific care and support that this patient group needs to be offered.
#136
https://journals.lww.com/tnpj/fulltext/2018/05000/idiopathic_pulmonary_fibrosis__a_guide_for_nurse.9.aspx
Patient education and self-management are critical to help patients with IPF manage their disease and make decisions regarding their care. Patients frequently require support with coming to terms with an IPF diagnosis and coping with the challenges associated with the disease. […] In addition to drug therapy, symptom relief and supportive care are important elements of IPF management. Common issues healthcare providers face when treating patients include dyspnea, cough, fatigue, and depression, which are often difficult to manage.
#137
https://link.springer.com/article/10.1007/s41030-023-00216-0
Anti-fibrotic medications slow the decline in lung function in patients with IPF. […] There is a growing body of evidence suggesting that anti-fibrotic medications reduce the risk of acute deteriorations in lung function and improve life expectancy in IPF. […] Barriers to the prescription of anti-fibrotic medications include delayed referral to specialist centres, restriction in the prescription based on percentage predicted of forced vital capacity (%FVC) targets, watch and wait approach adopted by patients and clinicians, and the side-effect profile of the medications. […] Treatment access could be improved by education of non-respiratory clinicians about the presenting symptoms of IPF, utilising computer-aided informatics, streamlining referral pathways and planned changes to the %FVC requirement for people to start anti-fibrotic medications.
#138 Care planning in idiopathic pulmonary fibrosis | Nursing Times
https://www.nursingtimes.net/respiratory/care-planning-in-idiopathic-pulmonary-fibrosis-27-04-2015/
Idiopathic pulmonary fibrosis is a progressive lung disorder requiring careful management in partnership with patients to slow its progress and optimise quality of life […] Patients with idiopathic pulmonary fibrosis require accurate diagnosis and treatment to improve their quality of life and prognosis. […] ILD clinical nurse specialists have a valuable role in helping patients to understand their diagnosis and uncertain prognosis, and to offer information about investigations and management. A CNS should be available throughout the care pathway. […] The CNS is integral to the multidisciplinary team in the care of patients with IPF. The landscape for the care of these patients has changed rapidly with the emergence of new therapies, and clinical trials continue. However, non-pharmacological management remains challenging due to the lack of evidence. The time for nurse-led research has never been better. […] The progressive nature of IPF means care should be shared between specialist and local services.
#139 Care planning in idiopathic pulmonary fibrosis | Nursing Times
https://www.nursingtimes.net/respiratory/care-planning-in-idiopathic-pulmonary-fibrosis-27-04-2015/
Idiopathic pulmonary fibrosis is a progressive lung disorder requiring careful management in partnership with patients to slow its progress and optimise quality of life […] Patients with idiopathic pulmonary fibrosis require accurate diagnosis and treatment to improve their quality of life and prognosis. […] ILD clinical nurse specialists have a valuable role in helping patients to understand their diagnosis and uncertain prognosis, and to offer information about investigations and management. A CNS should be available throughout the care pathway. […] The CNS is integral to the multidisciplinary team in the care of patients with IPF. The landscape for the care of these patients has changed rapidly with the emergence of new therapies, and clinical trials continue. However, non-pharmacological management remains challenging due to the lack of evidence. The time for nurse-led research has never been better. […] The progressive nature of IPF means care should be shared between specialist and local services.
#140 Care planning in idiopathic pulmonary fibrosis | Nursing Times
https://www.nursingtimes.net/respiratory/care-planning-in-idiopathic-pulmonary-fibrosis-27-04-2015/
Idiopathic pulmonary fibrosis is a progressive lung disorder requiring careful management in partnership with patients to slow its progress and optimise quality of life […] Patients with idiopathic pulmonary fibrosis require accurate diagnosis and treatment to improve their quality of life and prognosis. […] ILD clinical nurse specialists have a valuable role in helping patients to understand their diagnosis and uncertain prognosis, and to offer information about investigations and management. A CNS should be available throughout the care pathway. […] The CNS is integral to the multidisciplinary team in the care of patients with IPF. The landscape for the care of these patients has changed rapidly with the emergence of new therapies, and clinical trials continue. However, non-pharmacological management remains challenging due to the lack of evidence. The time for nurse-led research has never been better. […] The progressive nature of IPF means care should be shared between specialist and local services.
#141 A cross-sectional evaluation of the idiopathic pulmonary fibrosis patient satisfaction and quality of life with a care coordinator – Hambly – Journal of Thoracic Disease
https://jtd.amegroups.org/article/view/33941/html
Background: Canadian and international guidelines recommend specialized, multidisciplinary teams for the treatment of patients with idiopathic pulmonary fibrosis (IPF). The objective of this cross-sectional clinical study was to investigate the effect of a care coordinator on IPF patient satisfaction and quality of life. […] Conclusions: Reliance upon a coordinator during routine management of IPF patients may improve patient satisfaction, spare physician time and lead to annual cost-savings. Future studies should examine the impact of a coordinator on healthcare resource utilization. […] The primary objective of this cross-sectional study was to evaluate the impact of a coordinator on IPF patient satisfaction and HRQoL. The secondary objective was to assess the economic impact of including a coordinator in the management of IPF patients at the FIRH.
#142 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
The key identified needs are increasing disease awareness and disease-specific education, early and accurate diagnosis, access to specialized centers, access to antifibrotic treatment, a focus on symptom-based management, clinical trial access, and psychological support. […] In daily practice, extensive needs assessment may be pressured by time constraints. […] Furthermore, caregivers also have unmet needs and should be supported with proper strategies, including educational programs and social and psychological support. […] Palliative care aims to improve HRQOL for patients and their caregivers throughout the disease course, which is particularly relevant in PF due to the high disease burden and often progressive disease course. […] As many people interpret palliative care as end-of-life care, careful explanation or the use of alternative wording, such as supportive care, may be used to avoid causing unnecessary worries in patients and families.
#143 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
This model can help raise awareness of the importance of holistic care for patients with PF. […] Access refers to raising PF awareness among clinicians and the general public and adopting of eHealth technologies, thereby providing early access to specialized centers, information and education, and clinical trial options. […] Anticipate encompasses continuous assessment of patient needs, preventive measures, disease monitoring, and advance care planning (ACP). […] Finally, the Act domain focusses on the timely initiation of disease-modifying treatment and symptom relief, early evaluation for lung transplantation (LTx), and promptly adopting end-of-life care. […] Optimizing patient-centered care is not possible without understanding the needs of patients and their caregivers. […] Patient needs should be the central focus and anticipated at every stage of care.
#144
https://link.springer.com/article/10.1007/s41030-023-00216-0
Anti-fibrotic medications slow the decline in lung function in patients with IPF. […] There is a growing body of evidence suggesting that anti-fibrotic medications reduce the risk of acute deteriorations in lung function and improve life expectancy in IPF. […] Barriers to the prescription of anti-fibrotic medications include delayed referral to specialist centres, restriction in the prescription based on percentage predicted of forced vital capacity (%FVC) targets, watch and wait approach adopted by patients and clinicians, and the side-effect profile of the medications. […] Treatment access could be improved by education of non-respiratory clinicians about the presenting symptoms of IPF, utilising computer-aided informatics, streamlining referral pathways and planned changes to the %FVC requirement for people to start anti-fibrotic medications.
#145
https://link.springer.com/article/10.1007/s41030-023-00216-0
Anti-fibrotic medications slow the decline in lung function in patients with IPF. […] There is a growing body of evidence suggesting that anti-fibrotic medications reduce the risk of acute deteriorations in lung function and improve life expectancy in IPF. […] Barriers to the prescription of anti-fibrotic medications include delayed referral to specialist centres, restriction in the prescription based on percentage predicted of forced vital capacity (%FVC) targets, watch and wait approach adopted by patients and clinicians, and the side-effect profile of the medications. […] Treatment access could be improved by education of non-respiratory clinicians about the presenting symptoms of IPF, utilising computer-aided informatics, streamlining referral pathways and planned changes to the %FVC requirement for people to start anti-fibrotic medications.
#146
https://link.springer.com/article/10.1007/s41030-023-00216-0
Anti-fibrotic medications slow the decline in lung function in patients with IPF. […] There is a growing body of evidence suggesting that anti-fibrotic medications reduce the risk of acute deteriorations in lung function and improve life expectancy in IPF. […] Barriers to the prescription of anti-fibrotic medications include delayed referral to specialist centres, restriction in the prescription based on percentage predicted of forced vital capacity (%FVC) targets, watch and wait approach adopted by patients and clinicians, and the side-effect profile of the medications. […] Treatment access could be improved by education of non-respiratory clinicians about the presenting symptoms of IPF, utilising computer-aided informatics, streamlining referral pathways and planned changes to the %FVC requirement for people to start anti-fibrotic medications.
#147
https://link.springer.com/article/10.1007/s41030-023-00216-0
Anti-fibrotic medications slow the decline in lung function in patients with IPF. […] There is a growing body of evidence suggesting that anti-fibrotic medications reduce the risk of acute deteriorations in lung function and improve life expectancy in IPF. […] Barriers to the prescription of anti-fibrotic medications include delayed referral to specialist centres, restriction in the prescription based on percentage predicted of forced vital capacity (%FVC) targets, watch and wait approach adopted by patients and clinicians, and the side-effect profile of the medications. […] Treatment access could be improved by education of non-respiratory clinicians about the presenting symptoms of IPF, utilising computer-aided informatics, streamlining referral pathways and planned changes to the %FVC requirement for people to start anti-fibrotic medications.
#148 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
This model can help raise awareness of the importance of holistic care for patients with PF. […] Access refers to raising PF awareness among clinicians and the general public and adopting of eHealth technologies, thereby providing early access to specialized centers, information and education, and clinical trial options. […] Anticipate encompasses continuous assessment of patient needs, preventive measures, disease monitoring, and advance care planning (ACP). […] Finally, the Act domain focusses on the timely initiation of disease-modifying treatment and symptom relief, early evaluation for lung transplantation (LTx), and promptly adopting end-of-life care. […] Optimizing patient-centered care is not possible without understanding the needs of patients and their caregivers. […] Patient needs should be the central focus and anticipated at every stage of care.
#149 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
This model can help raise awareness of the importance of holistic care for patients with PF. […] Access refers to raising PF awareness among clinicians and the general public and adopting of eHealth technologies, thereby providing early access to specialized centers, information and education, and clinical trial options. […] Anticipate encompasses continuous assessment of patient needs, preventive measures, disease monitoring, and advance care planning (ACP). […] Finally, the Act domain focusses on the timely initiation of disease-modifying treatment and symptom relief, early evaluation for lung transplantation (LTx), and promptly adopting end-of-life care. […] Optimizing patient-centered care is not possible without understanding the needs of patients and their caregivers. […] Patient needs should be the central focus and anticipated at every stage of care.
#150 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
The key identified needs are increasing disease awareness and disease-specific education, early and accurate diagnosis, access to specialized centers, access to antifibrotic treatment, a focus on symptom-based management, clinical trial access, and psychological support. […] In daily practice, extensive needs assessment may be pressured by time constraints. […] Furthermore, caregivers also have unmet needs and should be supported with proper strategies, including educational programs and social and psychological support. […] Palliative care aims to improve HRQOL for patients and their caregivers throughout the disease course, which is particularly relevant in PF due to the high disease burden and often progressive disease course. […] As many people interpret palliative care as end-of-life care, careful explanation or the use of alternative wording, such as supportive care, may be used to avoid causing unnecessary worries in patients and families.
#151 Patient-centered care in pulmonary fibrosis: access, anticipate, and act | Respiratory Research | Full Text
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-024-02997-7
Non-pharmacological strategies for managing psychological impairment include patient counseling, cognitive behavioral therapy, and peer support group participation. […] To our knowledge, no studies have investigated the effects of antidepressants on psychological distress in patients with PF. […] Many patients with IPF have a worse prognosis than those with lung cancer, end-of-life care is far less developed in this area, with less symptom relief achieved in IPF. […] Timely conversations about the place of dying will allow patients to die surrounded by their family and in their chosen setting. […] In conclusion, we believe that routinely addressing the domains of the Triple A Care model in clinical practice can improve the adoption of a more individually tailored approach to PF care.