Materiały źródłowe

• #1 Muscular Dystrophy: What It Is, Symptoms, Types & Treatment

  https://my.clevelandclinic.org/health/diseases/14128-muscular-dystrophy

  Muscular dystrophy refers to a group of more than 30 genetic conditions that cause muscle weakness and other muscle-related symptoms. The symptoms of muscular dystrophy get worse over time. Depending on the type, muscular dystrophy can affect your ability to move, walk and perform daily activities. It can also affect muscles that help your heart and lungs function. […] The main goal of treatment is to manage symptoms and improve your quality of life. Treatments can vary depending on the type of muscular dystrophy and may include: Physical and occupational therapies: The main goal of these therapies is to strengthen and stretch your muscles. They can help you maintain movement function. […] If you have muscular dystrophy or you’re taking care of someone with it, it’s important to advocate for yourself/them to ensure you/they get the best medical care and as much access to therapy as possible. Advocating for care can help you/them have the best possible quality of life.

• #2

  https://www.nhs.uk/conditions/muscular-dystrophy/

  The muscular dystrophies (MD) are a group of inherited genetic conditions that gradually cause the muscles to weaken, leading to an increasing level of disability. […] There’s no cure for MD, but treatment can help to manage many of the symptoms. […] There’s no cure for MD, but a range of treatments can help with the physical disabilities and problems that may develop. These can include: mobility assistance including exercise, physiotherapy and physical aids; support groups to deal with the practical and emotional impact of MD; surgery to correct postural deformities, such as scoliosis; medicine such as steroids to improve muscle strength, or ACE inhibitors and beta blockers to treat heart problems. […] Support groups and organisations may help you understand and come to terms with your condition. They can also provide useful advice and support for those who care for people with MD.

• #3 13.4 Muscular Dystrophy – Medical-Surgical Nursing | OpenStax

  https://openstax.org/books/medical-surgical-nursing/pages/13-4-muscular-dystrophy

  Most of the nursing care for patients with MD centers around maintaining the highest quality of life possible and minimizing the negative effects associated with progressive muscle weakness. […] Most of the nursing interventions for patients with MD center around maintaining muscle function and slowing the progression of the disorder. These interventions include assisting with ADLs as needed, promoting as much independence as possible, helping with range of motion (ROM) exercises, alternating rest and activity periods to combat fatigue and muscle weakness, teaching deep breathing and relaxation techniques, implementing fall-risk precautions as needed, providing emotional support and teaching patient positive coping skills, and coordinating care with other members of the health-care team, including physical and occupational therapists.

• #4 13.4 Muscular Dystrophy – Medical-Surgical Nursing | OpenStax

  https://openstax.org/books/medical-surgical-nursing/pages/13-4-muscular-dystrophy

  Though MD is progressive, medical and nursing interventions can help slow the trajectory of the disorder. The nurse will need to evaluate the interventions to determine if the plan of care should be revised to ensure optimal patient outcomes. […] Nurses work with an interdisciplinary team and coordinate care for patients with MD. The provider orders the treatment plan, including medications and any specialty referrals needed to manage the patients care. The nurse implements the providers orders and educates the patient about their condition. The respiratory therapist provides set-up, maintenance, and instructions for any pulmonary machines, such as a sleep apnea or ventilator; they also educate the patient on pulmonary exercises, such as incentive spirometer, and breathing treatments. The case manager coordinates ancillary departments needed for a comprehensive plan of care, such as wound care or nutrition; they also coordinate resources and follow-up for the family once the patient is discharged.

• #5 Assembling a Care Team – Parent Project Muscular Dystrophy

  https://www.parentprojectmd.org/care/for-families/assembling-a-care-team/

  It is extremely important that you work with a multidisciplinary neuromuscular team that has experience and expertise managing all aspects of Duchenne and is able to meet the standards of Duchenne Care Guidelines. […] Your neuromuscular team will be led by a neuromuscular specialist and will include many sub-specialists, each giving input into the best and most appropriate plan for your care. A care coordinator will help to organize your care, as well as communication between members of your team, your primary care providers, and you. […] PPMDs Certified Duchenne Care Center Program makes it easier for families to find centers with comprehensive care teams that are providing optimal Duchenne care. […] Your care coordinator is the center of your neuromuscular team. This person will work with the neuromuscular specialist (NMS) and all of the members of your neuromuscular (NM) team to coordinate your care.

• #6 Assembling a Care Team – Parent Project Muscular Dystrophy

  https://www.parentprojectmd.org/care/for-families/assembling-a-care-team/

  Your neuromuscular specialist (NMS) will be the leader of your neuromuscular team. The NMS will manage the musculoskeletal issues associated with Duchenne. […] A cardiologist is a heart specialist. The cardiologist should check your heart when the diagnosis of Duchenne is made. […] Every person should have a dentist visit every six months (by a traditional dentist). […] Developmental-behavioral pediatricians manage the medical and psychosocial aspects of children and adolescents developmental and behavioral problems. […] Endocrinology specialists manage concerns and problems related to hormones, including concerns hormones that regulate growth, puberty, and bone health. […] Gastroenterologists specialize in issues related to the stomach and digestive system. […] A genetic counselor can explain the cause[s] of muscular dystrophy, the typical symptoms, and how the disorder tends to progress.

• #7 Muscular Dystrophy Nursing Diagnosis & Care Plan – NurseStudy.Net

  https://nursestudy.net/muscular-dystrophy-nursing-diagnosis/

  Assess muscle strength, Evaluate range of motion, Monitor for contractures, Document the progression of weakness, Assess gait and balance. […] Monitor respiratory status regularly, Teach breathing exercises, Position for optimal breathing. […] Assess the level of independence in ADLs, Teach energy conservation techniques, Provide assistive devices. […] Perform regular skin assessments, Implement pressure relief techniques, Maintain proper nutrition and hydration. […] Assess the social support system, Encourage participation in support groups, Facilitate communication aids if needed.

• #8 Muscular dystrophy | Better Health Channel

  https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/muscular-dystrophy

  Muscular dystrophies are inherited muscle conditions. […] There is currently no cure for any of the 30 types of muscular dystrophy. […] Early diagnosis of muscular dystrophy will enable the most appropriate management of the condition from a young age. […] To help ease discomfort, reduce joint contractures, and prevent or delay scoliosis, physiotherapists offer advice on stretches and exercises, and the prescription of orthoses and other orthopaedic devices. […] Occupational therapists also provide advice on sitting positions and activities. […] Such treatment can keep affected people walking for longer and maximise independence in daily living. […] For some types of muscular dystrophy, medication can help manage the symptoms of the condition. […] If your child or another family member has been diagnosed with muscular dystrophy, or if it runs in your family, it may be helpful to speak to a genetic counsellor.

• #9 Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan

  https://pmc.ncbi.nlm.nih.gov/articles/PMC5902408/

  Improvements in the function, quality of life, and longevity of patients with Duchenne muscular dystrophy (DMD) have been achieved through a multidisciplinary approach to management across a range of health-care specialties. […] Many primary care and emergency medicine clinicians are inexperienced at managing the complications of DMD. We provide a guide to the acute and chronic medical conditions that these first-line providers are likely to encounter. […] The primary care provider is often the first medical professional to hear a family’s concern about their child’s muscle weakness, initiating the process that leads to a diagnosis of DMD. […] The primary care provider should make the most of the opportunity to establish a strong and trusting relationship with an affected family, which can provide a much-needed source of stability and support as patients interact with a host of specialised medical providers.

• #10 13.4 Muscular Dystrophy – Medical-Surgical Nursing | OpenStax

  https://openstax.org/books/medical-surgical-nursing/pages/13-4-muscular-dystrophy

  Most of the nursing care for patients with MD centers around maintaining the highest quality of life possible and minimizing the negative effects associated with progressive muscle weakness. […] Most of the nursing interventions for patients with MD center around maintaining muscle function and slowing the progression of the disorder. These interventions include assisting with ADLs as needed, promoting as much independence as possible, helping with range of motion (ROM) exercises, alternating rest and activity periods to combat fatigue and muscle weakness, teaching deep breathing and relaxation techniques, implementing fall-risk precautions as needed, providing emotional support and teaching patient positive coping skills, and coordinating care with other members of the health-care team, including physical and occupational therapists.

• #11 Duchenne muscular dystrophy care plan | Muscular Dystrophy NewsEnvelope icon

  https://musculardystrophynews.com/duchenne-muscular-dystrophy-care-plan/

  Physical therapy is key for children with DMD, even if they don’t have symptoms yet. Safe and appropriate exercise regimens can help keep muscles strong and delay losing physical abilities. […] Muscle and joint care is particularly important. It might include stretching several times a week to help delay or minimize contractures (where the joints become locked in one position). […] Heart care is also important. […] Mental health care should be considered. […] Mobility and accessibility needs to be reassessed, as people with DMD are wheelchair-dependent at this point. […] Heart care is very important at this stage, as heart problems are common. […] Respiratory care plays a bigger role at this stage. […] Orthopedic care must be considered, especially if adolescents develop significant contractures or serious scoliosis.

• #12 Duchenne muscular dystrophy care plan | Muscular Dystrophy NewsEnvelope icon

  https://musculardystrophynews.com/duchenne-muscular-dystrophy-care-plan/

  Physical therapy is key for children with DMD, even if they don’t have symptoms yet. Safe and appropriate exercise regimens can help keep muscles strong and delay losing physical abilities. […] Muscle and joint care is particularly important. It might include stretching several times a week to help delay or minimize contractures (where the joints become locked in one position). […] Heart care is also important. […] Mental health care should be considered. […] Mobility and accessibility needs to be reassessed, as people with DMD are wheelchair-dependent at this point. […] Heart care is very important at this stage, as heart problems are common. […] Respiratory care plays a bigger role at this stage. […] Orthopedic care must be considered, especially if adolescents develop significant contractures or serious scoliosis.

• #13 Medical Management – Duchenne Muscular Dystrophy (DMD) – Diseases | Muscular Dystrophy Association

  https://www.mda.org/disease/duchenne-muscular-dystrophy/medical-management

  While physical therapy emphasizes mobility and, where possible, strengthening of large muscle groups, occupational therapy focuses on specific activities and functions. Occupational therapy can help with tasks for work, recreation, or daily living, such as dressing or using a computer. […] As the muscles that assist in breathing get weaker, the bronchial system must be kept free of secretions, either by using a cough assist device or by manual assisted coughing with the help of a caregiver. A respiratory therapist or pulmonologist can be consulted for the needed information. At some point, assisted ventilation may be needed to help provide sufficient air flow into and out of the lungs. […] The first step in using assisted ventilation is usually a noninvasive device, meaning one that does not require any surgical procedures. The person receives air under pressure through a mask, nosepiece, or mouthpiece. Noninvasive ventilation usually is required only part time, often only during sleep.

• #14

  https://www.nhs.uk/conditions/muscular-dystrophy/treatment/

  Once the chest muscles become too weak to control breathing properly, you may need machines to assist with your breathing and coughing, particularly while sleeping. […] In people with Duchenne MD, corticosteroid medicine (steroids) has been shown to improve muscle strength and function for 6 months to 2 years, and slow down the process of muscle weakening. […] Recent research has also shown that a creatine supplement can improve muscle strength in some people with MD, while causing few side effects. […] People with some types of MD find swallowing increasingly difficult as the condition progresses. This is known as dysphagia and it can increase your risk of choking or developing a chest infection, if food and liquid get into the lungs. […] Depending on the severity of your swallowing problems, there are a number of treatments that can be used.

• #15 Medical Management – Duchenne Muscular Dystrophy (DMD) – Diseases | Muscular Dystrophy Association

  https://www.mda.org/disease/duchenne-muscular-dystrophy/medical-management

  If round-the-clock ventilatory support becomes necessary, it is possible to use noninvasive ventilation full time, under the care of a doctor knowledgeable in this practice. Some young men choose to switch to an invasive system, which means that a surgical opening called a tracheostomy is performed, allowing air to be delivered directly into the trachea (windpipe). […] Updates to the 2010 Centers for Disease Control (CDC) Care Considerations for Duchenne muscular dystrophy were published in 2018. […] General recommendations for medical care in DMD were issued in 2010 by the DMD Care Considerations Working Group, under the auspices of the US CDC. These include: DMD: diagnosis, and pharmacological and psychosocial management; DMD: implementation of multidisciplinary care.

• #16 Duchenne muscular dystrophy care plan | Muscular Dystrophy NewsEnvelope icon

  https://musculardystrophynews.com/duchenne-muscular-dystrophy-care-plan/

  Physical therapy is key for children with DMD, even if they don’t have symptoms yet. Safe and appropriate exercise regimens can help keep muscles strong and delay losing physical abilities. […] Muscle and joint care is particularly important. It might include stretching several times a week to help delay or minimize contractures (where the joints become locked in one position). […] Heart care is also important. […] Mental health care should be considered. […] Mobility and accessibility needs to be reassessed, as people with DMD are wheelchair-dependent at this point. […] Heart care is very important at this stage, as heart problems are common. […] Respiratory care plays a bigger role at this stage. […] Orthopedic care must be considered, especially if adolescents develop significant contractures or serious scoliosis.

• #17

  https://www.nhs.uk/conditions/muscular-dystrophy/treatment/

  There’s currently no cure for muscular dystrophy (MD), but a variety of treatments can help to manage the condition. […] As different types of MD can cause quite specific problems, the treatment you receive will be tailored to your needs. […] As MD progresses, it weakens your muscles and you gradually begin to lose mobility and strength. These physical problems can be helped with: low-impact exercise, such as swimming; physiotherapy, which can be useful for maintaining muscle strength, preserving flexibility and preventing stiff joints; physical aids, such as a wheelchair, leg braces or crutches, which can help you stand and stay mobile; occupational therapy, which can help maximise or improve your independence by using different techniques, changing your environment and providing any necessary assistive equipment.

• #18

  https://myhealth.alberta.ca/Health/aftercareinformation/pages/conditions.aspx?hwid=uh4686

  Finding out that your child has muscular dystrophy (MD) can be upsetting. You may be worried about your child’s future. But many people with this disease live an active life. […] There are many treatments to help your child stay as active as possible. These include medicine, physiotherapy, and devices to support the muscles. You can work with your doctor to make a treatment plan. […] Follow-up care is a key part of your child’s treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse advice line if your child is having problems. It’s also a good idea to know your child’s test results and keep a list of the medicines your child takes. […] Learn how to do range-of-motion exercises with your child. These can help your child’s joints stay flexible. They can also help keep the back straight. A physiotherapist can help you set up a schedule and teach you how to do the exercises.

• #19 Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan

  https://pmc.ncbi.nlm.nih.gov/articles/PMC5902408/

  Comprehensive care of individuals with DMD should include surveillance and management of the psychosocial effect of the disease across the lifespan, which now extends well into adulthood for many patients. […] Psychosocial support should be developed and implemented across the lifespan in a manner that promotes thinking about the future and sets expectations that individuals will actively participate in their care and daily activities. […] Transition planning should include a plan for continuity of health care with paediatric providers (primary care and subspecialists) until adult care is established. […] The care coordinator can serve as a central resource for questions; facilitate communication between providers and the family; navigate insurance benefit eligibility; assist with acquisition of prescribed equipment; identify community care agencies; advocate for students in their schools; ensure transmission of medical records; identify and protect financial resources; and enlist the help of social care systems, such as human service organisations, specialty clinics, and advocacy groups.

• #20 13.4 Muscular Dystrophy – Medical-Surgical Nursing | OpenStax

  https://openstax.org/books/medical-surgical-nursing/pages/13-4-muscular-dystrophy

  Most of the nursing care for patients with MD centers around maintaining the highest quality of life possible and minimizing the negative effects associated with progressive muscle weakness. […] Most of the nursing interventions for patients with MD center around maintaining muscle function and slowing the progression of the disorder. These interventions include assisting with ADLs as needed, promoting as much independence as possible, helping with range of motion (ROM) exercises, alternating rest and activity periods to combat fatigue and muscle weakness, teaching deep breathing and relaxation techniques, implementing fall-risk precautions as needed, providing emotional support and teaching patient positive coping skills, and coordinating care with other members of the health-care team, including physical and occupational therapists.

• #21

  https://www.termedia.pl/NURSING-CARE-AND-EDUCATION-OF-THE-FAMILY-OF-A-CHILD-WITH-DUCHENNE-MUSCULAR-DYSTROPHY,99,52016,0,1.html

  In such a case, a holistic approach to the patient is required that encompasses all areas of life and all aspects of the disease. […] The nurse not only deals with medical problems, but also provides support with mental, social and spiritual problems. […] The patient also needs care and support from the family, and education is helpful in preparing them to fulfil these tasks.

• #22

  https://myhealth.alberta.ca/Health/aftercareinformation/pages/conditions.aspx?hwid=uh4686

  Talk to your doctor about special devices to help your child keep good posture and stay active. […] Be safe with medicines. Have your child take medicines exactly as prescribed. Call your doctor or nurse advice line if you think your child is having a problem with any medicine. You will get more details on the specific medicines your doctor prescribes. […] Gently massage your child’s limbs and joints. This can help with pain and stiffness. Heat will help too. Put a warm, moist cloth on the sore area. […] Be aware of possible challenges. Children who have muscular dystrophy may have more social, emotional, and educational problems. […] Watch closely for changes in your child’s health, and be sure to contact your doctor or nurse advice line if your child strains when having a bowel movement and seems to be constipated.

• #23 Muscular dystrophy Information | Mount Sinai – New York

  https://www.mountsinai.org/health-library/condition/muscular-dystrophy

  The goal of treatment is to maintain the person’s optimal physical and emotional health by preventing joint and spinal deformities. This prolongs the ability to walk. Doctors may introduce assisted breathing as needed, and lifelong physiotherapy is necessary. You may need orthopedic devices may be needed for support. Hydrotherapy, such as continuous tub baths, may help maintain a full range of joint motion. Physical, occupational, respiratory, and speech therapy may also help patients manage the symptoms of MD. Some clinicians recommend submaximum aerobic exercise, especially in the early course of the disease. […] Regular massage is important for reducing spasm and muscle contractions.

• #24 Advancements in Nursing Care for Muscular Dystrophy Patients

  https://www.caremark.co.uk/news/nursing-care-for-muscular-dystrophy-patients/

  The landscape of healthcare and patient support is continuously evolving, with significant strides being made in various fields. Among these, the area of nursing care for muscular dystrophy has seen remarkable progress, offering new insights and solutions for those affected by this condition. […] This presents unique challenges in nursing care, requiring a blend of clinical expertise and compassionate support. Advances in our understanding of MD have led to more effective management strategies, tailored to meet the individual needs of patients. […] The cornerstone of modern nursing care for MD patients is the creation of personalised care plans. These plans are developed through a collaborative process involving patients, their families, and healthcare professionals. Personalisation extends to all aspects of care, from medication management to physical therapy, ensuring that each patients unique requirements are met.

• #25 Advancements in Nursing Care for Muscular Dystrophy Patients

  https://www.caremark.co.uk/news/nursing-care-for-muscular-dystrophy-patients/

  Technology has revolutionised the way nursing care is delivered to MD patients. Innovative tools, such as wearable devices and telehealth services, facilitate continuous monitoring and management of the condition. This technological integration not only enhances the quality of care but also empowers patients to maintain a degree of independence. […] A multidisciplinary approach is essential in managing muscular dystrophy, involving various specialists like neurologists, physiotherapists, and dieticians. This collaborative effort ensures a comprehensive care package, addressing not just the physical aspects of MD, but also its psychological and social implications. […] Nursing professionals play a vital role in delivering education and awareness programs. These programs cover various aspects of muscular dystrophy, including symptom management, lifestyle modifications, and available treatment options. By being well-informed, patients and families can actively participate in the care process, leading to better health outcomes.

• #26 Duchenne muscular dystrophy care plan | Muscular Dystrophy NewsEnvelope icon

  https://musculardystrophynews.com/duchenne-muscular-dystrophy-care-plan/

  Treatment and care plans for Duchenne muscular dystrophy (DMD), a genetic disease where mutations in the DMD gene cause muscles to weaken and degenerate, should evolve over time to meet changing needs. […] Because disease progression can vary significantly, each person’s DMD care plan will be different and address their specific needs and goals. […] The optimal care plan for DMD is continuously evolving as a person’s disease progresses. From the onset, DMD care requires a multidisciplinary team, ranging from primary care physicians to neuromuscular specialists, physical therapists, and nursing care, among others. […] Families should be in frequent communication with their healthcare team to decide when changes in care are necessary or if new specialists need to be brought on board. […] In the early stages of DMD, the most important care goals are to establish a stable healthcare team and start on interventions that can preventively slow the expected physical declines.

• #27 Nursing Care Plan For Muscular Dystrophy | Planning For Care

  https://planningforcare.co.uk/product/nursing-care-plan-for-muscular-dystrophy/

  Muscular dystrophies (MD) are a group of inherited genetic conditions which gradually cause the muscles to weaken. This leads to an increasing level of disability. MD is a progressive condition, which means that it gets worse over time. […] The Care Plan sets out a clear explanation of the resident’s issue, and will quickly guide the nurse or carer through the process of preparing a comprehensive, individual person centred Care Plan. […] Muscular Dystrophy Nursing Care Plan Features: Identifies the symptoms and issues experienced […] Details the comprehensive plan of care […] Identifies possible complications.

• #28 Development of respiratory care guidelines for Duchenne muscular dystrophy in the UK: key recommendations for clinical practice | Thorax

  https://thorax.bmj.com/content/79/5/476

  Children and adults with DMD and compromised respiratory function can rapidly deteriorate during an intercurrent infection. […] It is therefore important that an individualised emergency healthcare plan is in place and discussed with the patient and family and referred to in case of acute hospital admission.

• #29 Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan

  https://pmc.ncbi.nlm.nih.gov/articles/PMC5902408/

  The primary care provider should be aware of the significant improvements in survival that have been achieved with contemporary DMD management so that the family is not presented with an overly pessimistic view of the child’s prognosis. […] The goals are for the primary care provider to provide first-line care for acute and chronic medical issues, coordinate care with appropriate specialists, provide trusted advice and continuity of care across the lifespan, and optimise the wellbeing and quality of life of patients and their family members. […] The local emergency department might be inexperienced in caring for individuals with DMD. To optimise patient outcomes, medical providers need a good background in the issues uniquely relevant to the emergency management of individuals with DMD.

• #30 Advancements in Nursing Care for Muscular Dystrophy Patients

  https://www.caremark.co.uk/news/nursing-care-for-muscular-dystrophy-patients/

  Technology has revolutionised the way nursing care is delivered to MD patients. Innovative tools, such as wearable devices and telehealth services, facilitate continuous monitoring and management of the condition. This technological integration not only enhances the quality of care but also empowers patients to maintain a degree of independence. […] A multidisciplinary approach is essential in managing muscular dystrophy, involving various specialists like neurologists, physiotherapists, and dieticians. This collaborative effort ensures a comprehensive care package, addressing not just the physical aspects of MD, but also its psychological and social implications. […] Nursing professionals play a vital role in delivering education and awareness programs. These programs cover various aspects of muscular dystrophy, including symptom management, lifestyle modifications, and available treatment options. By being well-informed, patients and families can actively participate in the care process, leading to better health outcomes.

• #31 Advancements in Nursing Care for Muscular Dystrophy Patients

  https://www.caremark.co.uk/news/nursing-care-for-muscular-dystrophy-patients/

  Technology has revolutionised the way nursing care is delivered to MD patients. Innovative tools, such as wearable devices and telehealth services, facilitate continuous monitoring and management of the condition. This technological integration not only enhances the quality of care but also empowers patients to maintain a degree of independence. […] A multidisciplinary approach is essential in managing muscular dystrophy, involving various specialists like neurologists, physiotherapists, and dieticians. This collaborative effort ensures a comprehensive care package, addressing not just the physical aspects of MD, but also its psychological and social implications. […] Nursing professionals play a vital role in delivering education and awareness programs. These programs cover various aspects of muscular dystrophy, including symptom management, lifestyle modifications, and available treatment options. By being well-informed, patients and families can actively participate in the care process, leading to better health outcomes.

• #32 Duchenne muscular dystrophy care plan | Muscular Dystrophy NewsEnvelope icon

  https://musculardystrophynews.com/duchenne-muscular-dystrophy-care-plan/

  Treatment and care plans for Duchenne muscular dystrophy (DMD), a genetic disease where mutations in the DMD gene cause muscles to weaken and degenerate, should evolve over time to meet changing needs. […] Because disease progression can vary significantly, each person’s DMD care plan will be different and address their specific needs and goals. […] The optimal care plan for DMD is continuously evolving as a person’s disease progresses. From the onset, DMD care requires a multidisciplinary team, ranging from primary care physicians to neuromuscular specialists, physical therapists, and nursing care, among others. […] Families should be in frequent communication with their healthcare team to decide when changes in care are necessary or if new specialists need to be brought on board. […] In the early stages of DMD, the most important care goals are to establish a stable healthcare team and start on interventions that can preventively slow the expected physical declines.

• #33 Duchenne muscular dystrophy care plan | Muscular Dystrophy NewsEnvelope icon

  https://musculardystrophynews.com/duchenne-muscular-dystrophy-care-plan/

  Visits with cardiologists and pulmonologists to manage heart and lung issues continue but may become more frequent as DMD progresses and these issues become more invasive. […] Families may consider at-home nursing care or other types of support at this stage to support caregivers with assistive functions. […] Caregivers play a critical role in DMD management at every stage, as they are primarily responsible for managing day-to-day life. […] Caregivers should always keep in mind maintaining their own physical and mental health is also a critical component of the DMD care plan.

• #34 How Home Care Workers Help with Muscular Dystrophy | Best Care

  https://bestcaremn.com/blog/how-home-care-workers-help-individuals-with-muscular-dystrophy/

  Muscular dystrophy (MD) is a group of inherited muscle disorders in which there is skeletal muscle weakness and muscle tissue loss. […] Quality of life is severely affected and the child has poor balance, weak muscles and poor gait which make him susceptible to falls and injuries. […] There is currently no cure for MD, however, physical therapy, orthopedic appliances, corticosteroids and reasonable physical activity can control symptoms. […] Personnel care attendants, home care support workers and professional caregivers can help people with muscular dystrophy in a number of ways. […] All these can be provided by competent and trustworthy home care support workers who are willing to go the extra mile in caring for your loved ones with MD. […] Since there is no cure yet for this debilitating disease, the goal is to maintain muscle tone and strength for mobility so that clients would retain the ability to walk, prevent contractures and delay the overall progression.

• #35 What are the treatments for muscular dystrophy (MD)? | NICHD – Eunice Kennedy Shriver National Institute of Child Health and Human Development

  http://www.nichd.nih.gov/health/topics/musculardys/conditioninfo/treatment

  Currently available treatments for MD can help manage and reduce the severity of symptoms. […] Beginning physical therapy early can help keep muscles flexible and strong. […] Because the body relies on muscles such as the diaphragm to breathe, weakened muscles from MD may affect breathing. […] MD patients who experience weakness in the facial and throat muscles may benefit from speech therapy to teach them how to maximize their muscle strength. […] As physical abilities change, occupational therapy can help patients with MD relearn lost motor skills and learn ways to work around weakened muscles. […] At various times and depending on the form of MD, many people with MD need surgery to treat some of the conditions associated with MD. […] Certain medications can help delay damage to muscles or minimize the symptoms of MD. […] Restoring a genes ability to produce usable proteins as a treatment for MD is an active area of study, but many of these therapies are still in development.

• #36

  https://www.nhs.uk/conditions/muscular-dystrophy/treatment/

  Once the chest muscles become too weak to control breathing properly, you may need machines to assist with your breathing and coughing, particularly while sleeping. […] In people with Duchenne MD, corticosteroid medicine (steroids) has been shown to improve muscle strength and function for 6 months to 2 years, and slow down the process of muscle weakening. […] Recent research has also shown that a creatine supplement can improve muscle strength in some people with MD, while causing few side effects. […] People with some types of MD find swallowing increasingly difficult as the condition progresses. This is known as dysphagia and it can increase your risk of choking or developing a chest infection, if food and liquid get into the lungs. […] Depending on the severity of your swallowing problems, there are a number of treatments that can be used.

• #37 Duchenne Muscular Dystrophy (DMD): Symptoms & Treatment

  https://my.clevelandclinic.org/health/diseases/23538-duchenne-muscular-dystrophy-dmd

  Theres currently no cure for Duchene muscular dystrophy (DMD), so the main goal of treatment is to manage symptoms and improve quality of life. […] Supportive therapies for DMD include: […] Corticosteroids, such as prednisolone and deflazacort, are beneficial for delaying muscle strength loss, improving lung function, delaying scoliosis, slowing the progression of cardiomyopathy (heart weakness) and prolonging survival. […] Physical therapy: The main goal of physical therapy for DMD is to prevent contractures (permanent tightening of your muscles, tendons and skin). This usually involves certain stretching exercises. […] With improvement in supportive care over the years, the life expectancy of DMD has significantly improved over the past few decades. […] If youre taking care of someone with Duchenne muscular dystrophy (DMD), its important to advocate for them to ensure they get the best medical care and access to therapy that can help them have the best quality of life. […] If your child has been diagnosed with Duchenne muscular dystrophy, theyll need to see their team of healthcare providers regularly to receive treatment and monitor symptoms.

• #38 Muscular dystrophy – Diagnosis & treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/muscular-dystrophy/diagnosis-treatment/drc-20375394

  People with muscular dystrophy should be monitored throughout their lives. Their care team should include a neurologist with expertise in neuromuscular diseases, a physical medicine and rehabilitation specialist, and physical and occupational therapists. […] Treatment options include medications, physical and occupational therapy, and surgical and other procedures. Ongoing assessments of walking, swallowing, breathing and hand function enable the treatment team to adjust treatments as the disease progresses. […] Several types of therapy and assistive devices can improve the quality and sometimes the length of life in people who have muscular dystrophy. Examples include: […] Surgery might be needed to correct contractures or a spinal curvature that could eventually make breathing more difficult. Heart function may be improved with a pacemaker or other cardiac device. […] Respiratory infections can become a problem in muscular dystrophy. So, it’s important to be vaccinated for pneumonia and to keep up to date with influenza shots. Try to avoid contact with children or adults who have an obvious infection.

• #39 13.4: Muscular Dystrophy – Medicine LibreTexts

  https://med.libretexts.org/Bookshelves/Nursing/Medical-Surgical_Nursing_(OpenStax)/13%3A_Musculoskeletal_System/13.04%3A_Muscular_Dystrophy

  Though MD is progressive, medical and nursing interventions can help slow the trajectory of the disorder. The nurse will need to evaluate the interventions to determine if the plan of care should be revised to ensure optimal patient outcomes. […] When evaluating outcomes for the patient with MD, the nurse will look for specific findings indicating the interventions have been successful. These findings include improved muscle strength, normal cardiac rhythm, adequate oxygenation status, and positive coping skills. […] Nurses work with an interdisciplinary team and coordinate care for patients with MD.

• #40 Development of respiratory care guidelines for Duchenne muscular dystrophy in the UK: key recommendations for clinical practice | Thorax

  https://thorax.bmj.com/content/79/5/476

  The assessment of respiratory function in DMD needs to include a careful history to evaluate symptoms of sleep-disordered breathing, frequency of chest infections, ability to clear secretions, swallowing and ambulatory status in addition to measurement of lung function (pulmonary function tests (PFTs)). […] Monitoring of respiratory function should start as soon as is feasible after diagnosis and would be expected to be done routinely by the age of 6 years. […] Monitoring of respiratory function should occur every 6-12 months in ambulatory patients as part of routine clinical appointments, and every 6 months in non-ambulatory patients in view of their higher risk. […] Patients with symptoms of sleep-disordered breathing, abnormal PFTs or recurrent chest infections require onward referral to a specialist respiratory service.

• #41 Duchenne muscular dystrophy care plan | Muscular Dystrophy NewsEnvelope icon

  https://musculardystrophynews.com/duchenne-muscular-dystrophy-care-plan/

  Physical therapy is key for children with DMD, even if they don’t have symptoms yet. Safe and appropriate exercise regimens can help keep muscles strong and delay losing physical abilities. […] Muscle and joint care is particularly important. It might include stretching several times a week to help delay or minimize contractures (where the joints become locked in one position). […] Heart care is also important. […] Mental health care should be considered. […] Mobility and accessibility needs to be reassessed, as people with DMD are wheelchair-dependent at this point. […] Heart care is very important at this stage, as heart problems are common. […] Respiratory care plays a bigger role at this stage. […] Orthopedic care must be considered, especially if adolescents develop significant contractures or serious scoliosis.

• #42

  https://www.nhs.uk/conditions/muscular-dystrophy/treatment/

  There’s currently no cure for muscular dystrophy (MD), but a variety of treatments can help to manage the condition. […] As different types of MD can cause quite specific problems, the treatment you receive will be tailored to your needs. […] As MD progresses, it weakens your muscles and you gradually begin to lose mobility and strength. These physical problems can be helped with: low-impact exercise, such as swimming; physiotherapy, which can be useful for maintaining muscle strength, preserving flexibility and preventing stiff joints; physical aids, such as a wheelchair, leg braces or crutches, which can help you stand and stay mobile; occupational therapy, which can help maximise or improve your independence by using different techniques, changing your environment and providing any necessary assistive equipment.

• #43 Support for Muscular Dystrophy | NYU Langone Health

  https://nyulangone.org/conditions/muscular-dystrophy/support

  Regular visits to a respiratory specialist can help prevent breathing problems before they occur. […] Our doctors and specialists are skilled in finding the appropriate equipment and therapies for you. They provide training and support throughout treatment. […] NYU Langone doctors also recommend that people with muscular dystrophy keep up to date on vaccinations, including the flu vaccine, in order to avoid infections. […] Cardiac care, which focuses on the health of your heart, is a key component to managing certain types of muscular dystrophy. […] To avoid these complications, some people with muscular dystrophy may need to take medications to help the heart pump more efficiently or to manage arrhythmia. […] Registered dietitians at NYU Langone provide nutritional counseling to help people with muscular dystrophy maintain a healthy weight. […] Social workers at NYU Langone are available to help families cope with the stress of receiving a muscular dystrophy diagnosis and the demands of coordinating ongoing care.

• #44

  https://www.nhs.uk/conditions/muscular-dystrophy/treatment/

  If MD progresses to a point where you’re unable to get enough nutrition by swallowing, a feeding tube (gastrostomy or PEG) may need to be surgically implanted into your stomach through your abdomen (tummy). […] Some types of MD can affect the heart muscles and the muscles used for breathing. When the condition has progressed to this stage, it can become life-threatening. […] It’s important that your heart function is assessed regularly once MD has been diagnosed. […] You may be prescribed medicine to treat your heart problems, such as ACE inhibitors to relax your arteries and make it easier for your heart to pump blood around your body, or beta blockers to control irregular heartbeats (arrhythmias or dysrhythmias). […] In some severe cases of MD, surgery may be necessary to correct physical problems that can occur as a result of the condition.

• #45

  https://www.nhs.uk/conditions/muscular-dystrophy/treatment/

  If MD progresses to a point where you’re unable to get enough nutrition by swallowing, a feeding tube (gastrostomy or PEG) may need to be surgically implanted into your stomach through your abdomen (tummy). […] Some types of MD can affect the heart muscles and the muscles used for breathing. When the condition has progressed to this stage, it can become life-threatening. […] It’s important that your heart function is assessed regularly once MD has been diagnosed. […] You may be prescribed medicine to treat your heart problems, such as ACE inhibitors to relax your arteries and make it easier for your heart to pump blood around your body, or beta blockers to control irregular heartbeats (arrhythmias or dysrhythmias). […] In some severe cases of MD, surgery may be necessary to correct physical problems that can occur as a result of the condition.

• #46

  https://www.nhs.uk/conditions/muscular-dystrophy/treatment/

  Once the chest muscles become too weak to control breathing properly, you may need machines to assist with your breathing and coughing, particularly while sleeping. […] In people with Duchenne MD, corticosteroid medicine (steroids) has been shown to improve muscle strength and function for 6 months to 2 years, and slow down the process of muscle weakening. […] Recent research has also shown that a creatine supplement can improve muscle strength in some people with MD, while causing few side effects. […] People with some types of MD find swallowing increasingly difficult as the condition progresses. This is known as dysphagia and it can increase your risk of choking or developing a chest infection, if food and liquid get into the lungs. […] Depending on the severity of your swallowing problems, there are a number of treatments that can be used.

• #47

  https://www.nhs.uk/conditions/muscular-dystrophy/treatment/

  Once the chest muscles become too weak to control breathing properly, you may need machines to assist with your breathing and coughing, particularly while sleeping. […] In people with Duchenne MD, corticosteroid medicine (steroids) has been shown to improve muscle strength and function for 6 months to 2 years, and slow down the process of muscle weakening. […] Recent research has also shown that a creatine supplement can improve muscle strength in some people with MD, while causing few side effects. […] People with some types of MD find swallowing increasingly difficult as the condition progresses. This is known as dysphagia and it can increase your risk of choking or developing a chest infection, if food and liquid get into the lungs. […] Depending on the severity of your swallowing problems, there are a number of treatments that can be used.

• #48

  https://www.nhs.uk/conditions/muscular-dystrophy/treatment/

  If MD progresses to a point where you’re unable to get enough nutrition by swallowing, a feeding tube (gastrostomy or PEG) may need to be surgically implanted into your stomach through your abdomen (tummy). […] Some types of MD can affect the heart muscles and the muscles used for breathing. When the condition has progressed to this stage, it can become life-threatening. […] It’s important that your heart function is assessed regularly once MD has been diagnosed. […] You may be prescribed medicine to treat your heart problems, such as ACE inhibitors to relax your arteries and make it easier for your heart to pump blood around your body, or beta blockers to control irregular heartbeats (arrhythmias or dysrhythmias). […] In some severe cases of MD, surgery may be necessary to correct physical problems that can occur as a result of the condition.

• #49 Muscular dystrophy – Diagnosis & treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/muscular-dystrophy/diagnosis-treatment/drc-20375394

  People with muscular dystrophy should be monitored throughout their lives. Their care team should include a neurologist with expertise in neuromuscular diseases, a physical medicine and rehabilitation specialist, and physical and occupational therapists. […] Treatment options include medications, physical and occupational therapy, and surgical and other procedures. Ongoing assessments of walking, swallowing, breathing and hand function enable the treatment team to adjust treatments as the disease progresses. […] Several types of therapy and assistive devices can improve the quality and sometimes the length of life in people who have muscular dystrophy. Examples include: […] Surgery might be needed to correct contractures or a spinal curvature that could eventually make breathing more difficult. Heart function may be improved with a pacemaker or other cardiac device. […] Respiratory infections can become a problem in muscular dystrophy. So, it’s important to be vaccinated for pneumonia and to keep up to date with influenza shots. Try to avoid contact with children or adults who have an obvious infection.

• #50 Support for Muscular Dystrophy | NYU Langone Health

  https://nyulangone.org/conditions/muscular-dystrophy/support

  Regular visits to a respiratory specialist can help prevent breathing problems before they occur. […] Our doctors and specialists are skilled in finding the appropriate equipment and therapies for you. They provide training and support throughout treatment. […] NYU Langone doctors also recommend that people with muscular dystrophy keep up to date on vaccinations, including the flu vaccine, in order to avoid infections. […] Cardiac care, which focuses on the health of your heart, is a key component to managing certain types of muscular dystrophy. […] To avoid these complications, some people with muscular dystrophy may need to take medications to help the heart pump more efficiently or to manage arrhythmia. […] Registered dietitians at NYU Langone provide nutritional counseling to help people with muscular dystrophy maintain a healthy weight. […] Social workers at NYU Langone are available to help families cope with the stress of receiving a muscular dystrophy diagnosis and the demands of coordinating ongoing care.

• #51 Medical Management – Duchenne Muscular Dystrophy (DMD) – Diseases | Muscular Dystrophy Association

  https://www.mda.org/disease/duchenne-muscular-dystrophy/medical-management

  Thanks to advances in many areas of medicine, such as cardiology and pulmonology, people with Duchenne muscular dystrophy (DMD) in the 21st century are living longer than in previous decades, often well into adulthood. DMD treatment requires multidisciplinary care to coordinate the multiple specialized assessments and interventions needed to maximize function and quality of life for patients. […] The use of available treatments can help to maintain comfort and function and prolong life. MDA Care Center physicians can help create individualized care plans regarding all medical and assistive aspects DMD patients require. […] A physical therapy program is usually part of the treatment for DMD. Your MDA Care Center physician will refer you to a physical therapist for a thorough evaluation and recommendations. The primary goals of physical therapy are to allow greater motion in the joints and to prevent contractures and scoliosis.

• #52 Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan

  https://pmc.ncbi.nlm.nih.gov/articles/PMC5902408/

  Comprehensive care of individuals with DMD should include surveillance and management of the psychosocial effect of the disease across the lifespan, which now extends well into adulthood for many patients. […] Psychosocial support should be developed and implemented across the lifespan in a manner that promotes thinking about the future and sets expectations that individuals will actively participate in their care and daily activities. […] Transition planning should include a plan for continuity of health care with paediatric providers (primary care and subspecialists) until adult care is established. […] The care coordinator can serve as a central resource for questions; facilitate communication between providers and the family; navigate insurance benefit eligibility; assist with acquisition of prescribed equipment; identify community care agencies; advocate for students in their schools; ensure transmission of medical records; identify and protect financial resources; and enlist the help of social care systems, such as human service organisations, specialty clinics, and advocacy groups.

• #53 Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan

  https://pmc.ncbi.nlm.nih.gov/articles/PMC5902408/

  Comprehensive care of individuals with DMD should include surveillance and management of the psychosocial effect of the disease across the lifespan, which now extends well into adulthood for many patients. […] Psychosocial support should be developed and implemented across the lifespan in a manner that promotes thinking about the future and sets expectations that individuals will actively participate in their care and daily activities. […] Transition planning should include a plan for continuity of health care with paediatric providers (primary care and subspecialists) until adult care is established. […] The care coordinator can serve as a central resource for questions; facilitate communication between providers and the family; navigate insurance benefit eligibility; assist with acquisition of prescribed equipment; identify community care agencies; advocate for students in their schools; ensure transmission of medical records; identify and protect financial resources; and enlist the help of social care systems, such as human service organisations, specialty clinics, and advocacy groups.

• #54 Advancements in Nursing Care for Muscular Dystrophy Patients

  https://www.caremark.co.uk/news/nursing-care-for-muscular-dystrophy-patients/

  Technology has revolutionised the way nursing care is delivered to MD patients. Innovative tools, such as wearable devices and telehealth services, facilitate continuous monitoring and management of the condition. This technological integration not only enhances the quality of care but also empowers patients to maintain a degree of independence. […] A multidisciplinary approach is essential in managing muscular dystrophy, involving various specialists like neurologists, physiotherapists, and dieticians. This collaborative effort ensures a comprehensive care package, addressing not just the physical aspects of MD, but also its psychological and social implications. […] Nursing professionals play a vital role in delivering education and awareness programs. These programs cover various aspects of muscular dystrophy, including symptom management, lifestyle modifications, and available treatment options. By being well-informed, patients and families can actively participate in the care process, leading to better health outcomes.

• #55 What are the treatments for muscular dystrophy (MD)? | NICHD – Eunice Kennedy Shriver National Institute of Child Health and Human Development

  http://www.nichd.nih.gov/health/topics/musculardys/conditioninfo/treatment

  Currently available treatments for MD can help manage and reduce the severity of symptoms. […] Beginning physical therapy early can help keep muscles flexible and strong. […] Because the body relies on muscles such as the diaphragm to breathe, weakened muscles from MD may affect breathing. […] MD patients who experience weakness in the facial and throat muscles may benefit from speech therapy to teach them how to maximize their muscle strength. […] As physical abilities change, occupational therapy can help patients with MD relearn lost motor skills and learn ways to work around weakened muscles. […] At various times and depending on the form of MD, many people with MD need surgery to treat some of the conditions associated with MD. […] Certain medications can help delay damage to muscles or minimize the symptoms of MD. […] Restoring a genes ability to produce usable proteins as a treatment for MD is an active area of study, but many of these therapies are still in development.

• #56

  https://www.nhs.uk/conditions/muscular-dystrophy/treatment/

  If you or your child may benefit from having surgery, you’ll be referred to a specialist to discuss the procedure and the risks involved. […] New ideas for muscular dystrophy treatments are currently being developed. […] Speak to your GP or specialist if you’re interested in taking part in a clinical trial (a form of research that tests one treatment against another). […] Support groups and organisations may help you understand and come to terms with your condition. They can also provide useful advice and support for people who care for those with MD.

• #57 13.4 Muscular Dystrophy – Medical-Surgical Nursing | OpenStax

  https://openstax.org/books/medical-surgical-nursing/pages/13-4-muscular-dystrophy

  Most of the nursing care for patients with MD centers around maintaining the highest quality of life possible and minimizing the negative effects associated with progressive muscle weakness. […] Most of the nursing interventions for patients with MD center around maintaining muscle function and slowing the progression of the disorder. These interventions include assisting with ADLs as needed, promoting as much independence as possible, helping with range of motion (ROM) exercises, alternating rest and activity periods to combat fatigue and muscle weakness, teaching deep breathing and relaxation techniques, implementing fall-risk precautions as needed, providing emotional support and teaching patient positive coping skills, and coordinating care with other members of the health-care team, including physical and occupational therapists.

• #58 13.4 Muscular Dystrophy – Medical-Surgical Nursing | OpenStax

  https://openstax.org/books/medical-surgical-nursing/pages/13-4-muscular-dystrophy

  Though MD is progressive, medical and nursing interventions can help slow the trajectory of the disorder. The nurse will need to evaluate the interventions to determine if the plan of care should be revised to ensure optimal patient outcomes. […] Nurses work with an interdisciplinary team and coordinate care for patients with MD. The provider orders the treatment plan, including medications and any specialty referrals needed to manage the patients care. The nurse implements the providers orders and educates the patient about their condition. The respiratory therapist provides set-up, maintenance, and instructions for any pulmonary machines, such as a sleep apnea or ventilator; they also educate the patient on pulmonary exercises, such as incentive spirometer, and breathing treatments. The case manager coordinates ancillary departments needed for a comprehensive plan of care, such as wound care or nutrition; they also coordinate resources and follow-up for the family once the patient is discharged.

• #59

  https://www.termedia.pl/NURSING-CARE-AND-EDUCATION-OF-THE-FAMILY-OF-A-CHILD-WITH-DUCHENNE-r-nMUSCULAR-DYSTROPHY,99,52016,0,1.html

  Some individuals suffer from a little-known, rare genetic disease called Duchenne muscular dystrophy. […] Therefore, paying attention to people with this rare disease was the motivation to undertake a qualitative study in order to identify the tasks of the nurse in terms of medical care and education of both the patient himself and his family, based on a case study. […] Based on the study, it should be concluded that caring for a person with Duchenne muscular dystrophy presents a number of challenges. […] In such a case, a holistic approach to the patient is required that encompasses all areas of life and all aspects of the disease. […] The nurse not only deals with medical problems, but also provides support with mental, social and spiritual problems. […] The patient also needs care and support from the family, and education is helpful in preparing them to fulfil these tasks.

• #60

  https://www.termedia.pl/NURSING-CARE-AND-EDUCATION-OF-THE-FAMILY-OF-A-CHILD-WITH-DUCHENNE-MUSCULAR-DYSTROPHY,99,52016,0,1.html

  In such a case, a holistic approach to the patient is required that encompasses all areas of life and all aspects of the disease. […] The nurse not only deals with medical problems, but also provides support with mental, social and spiritual problems. […] The patient also needs care and support from the family, and education is helpful in preparing them to fulfil these tasks.

• #61 13.4: Muscular Dystrophy – Medicine LibreTexts

  https://med.libretexts.org/Bookshelves/Nursing/Medical-Surgical_Nursing_(OpenStax)/13%3A_Musculoskeletal_System/13.04%3A_Muscular_Dystrophy

  Though MD is progressive, medical and nursing interventions can help slow the trajectory of the disorder. The nurse will need to evaluate the interventions to determine if the plan of care should be revised to ensure optimal patient outcomes. […] When evaluating outcomes for the patient with MD, the nurse will look for specific findings indicating the interventions have been successful. These findings include improved muscle strength, normal cardiac rhythm, adequate oxygenation status, and positive coping skills. […] Nurses work with an interdisciplinary team and coordinate care for patients with MD.

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