Materiały źródłowe

• #1 PREDICT-CP: study protocol of implementation of comprehensive surveillance to predict outcomes for school-aged children with cerebral palsy

  https://pmc.ncbi.nlm.nih.gov/articles/PMC5734266/

  Cerebral palsy (CP) remains the worlds most common childhood physical disability with total annual costs of care and lost well-being of $A3.87b. […] The ability to better predict outcomes has the potential to guide intervention to reduce adverse outcomes (hip dislocation, poor growth, undernutrition or overnutrition, respiratory health complications from oropharyngeal dysphagia (OPD), pain, reduced participation in the community and under attainment at school). […] Understanding the relationship between specific brain MRI appearance and outcome measures such as motor function is critically important. […] In CP, there is a likely relationship between the severity of the early brain injury on structural MRI (nature, extent, presumed timing), early motor status at 3 years and later outcomes at 812 years (motor attainment, musculoskeletal performance, hip displacement).

• #2 PREDICT-CP: study protocol of implementation of comprehensive surveillance to predict outcomes for school-aged children with cerebral palsy | BMJ Open

  https://bmjopen.bmj.com/content/7/7/e014950

  Cerebral palsy (CP) remains the worlds most common childhood physical disability with total annual costs of care and lost well-being of $A3.87b. […] The ability to better predict outcomes has the potential to guide intervention to reduce adverse outcomes (hip dislocation, poor growth, undernutrition or overnutrition, respiratory health complications from oropharyngeal dysphagia (OPD), pain, reduced participation in the community and under attainment at school). […] Understanding the relationship between specific brain MRI appearance and outcome measures such as motor function is critically important. […] In CP, there is a likely relationship between the severity of the early brain injury on structural MRI (nature, extent, presumed timing), early motor status at 3 years and later outcomes at 812 years (motor attainment, musculoskeletal performance, hip displacement).

• #3 Cerebral Palsy Prognosis – Your Child’s Outlook

  https://www.cerebralpalsyguide.com/cerebral-palsy/prognosis/

  A prognosis for children with cerebral palsy is a prediction that indicates the chances of them performing certain motor skills, such as walking, in the future. […] A cerebral palsy prognosis is a prediction of the long-term effects the condition could have on a child’s overall motor function and quality of life. […] Doctors make a prognosis by observing a child’s motor skills, reflexes, and developmental milestones. […] When doctors give parents a prognosis of the child’s condition, they can make predictions about the child’s: Ability to walk, Overall mobility, Intellectual capacity, Life expectancy, Vision and hearing, Quality of life. […] It’s important for parents to keep in mind that a prognosis is only a projection of the likely course of their child’s disability — it’s not a guarantee, and many children do much better than their original prognosis predicted.

• #4 Cerebral Palsy Prognosis – What to Expect & Next Steps

  https://www.childbirthinjuries.com/cerebral-palsy/prognosis/

  Cerebral palsy is caused by damage to one or more parts of the brain. This affects muscle tone, muscle control and motor activity. Fortunately, the life expectancy of people with cerebral palsy is usually no different from those without the condition unless it is very severe. […] A prognosis is the predicted outcome of a disease or condition. When it comes to cerebral palsy, a prognosis evaluates a child’s likelihood of performing certain skills, such as walking, as they get older. […] A typical cerebral palsy prognosis is static. According to the U.S. Centers for Disease Control and Prevention (CDC), the condition neither improves nor worsens throughout life. However, after childhood, the symptoms can change. […] A child’s ability to live independently with cerebral palsy varies depending on the prognosis. Some patients will require personal assistant services for all activities of daily living. Other patients lead semi-independent lives, and some live in complete independence. The need for personal assistance may change as the patient gets older.

• #5 Cerebral Palsy Prognosis | How To Improve Outlook

  https://www.cerebralpalsyguidance.com/cerebral-palsy/prognosis/

  Most children with cerebral palsy have a good prognosis and can expect to live well into adulthood. The prognosis for cerebral palsy is different for every individual diagnosed because the condition is so varied in terms of symptoms and severity. […] Early diagnosis and treatment are most important for improving a child’s outlook. […] Understanding the prognosis will help you know how to plan for the future. […] It is challenging to determine an exact prognosis or to make a prognosis that fits every patient. […] Even with these complications, the forecast for quality of life or the ability to be independent is not pre-determined. […] The earlier these steps can be taken to improve the function and quality of life, the better the outcome will be. […] A child with cerebral palsy may have one or more complications or disabilities that have the potential to limit life expectancy. […] The prognosis for a particular child is difficult to determine. Still, parents can substantially help their children by improving their quality of life, mobility, independence, and other factors by using early intervention and appropriate treatment.

• #6 Care for children and youth with cerebral palsy (GMFCS levels III to V) | Canadian Paediatric Society

  https://cps.ca/en/documents/position/care-for-children-and-youth-with-cerebral-palsy

  Cerebral palsy (CP) is the most common physical disability in Canadian children. […] An accurate diagnosis of cerebral palsy (CP) is often possible to make in infants, based on a combination of findings from a physical examination tool (e.g., notably the Hammersmith Infant Neurological Examination (HINE)) and magnetic resonance imaging (MRI). CP subtype and future ambulation status can also be predicted on this basis. […] Guidelines recommend early intervention with task-specific motor training for infants with (or at high risk for) CP, to harness neuroplasticity and improve long-term motor and cognitive outcomes. […] By age 2, a gross motor trajectory can be established and the GMFCS is helpful for predicting motor outcomes. […] It is rare for individuals to move more than one level up or down on the GFMCS, and most of a child’s motor development has been achieved by 5 years of age.

• #7 Cerebral Palsy Prognosis – What to Expect & Next Steps

  https://www.childbirthinjuries.com/cerebral-palsy/prognosis/

  Typically, an accurate prognosis cannot be determined until after a child’s second birthday. During their first years of life, children are still developing mentally and physically. This is why many doctors need time to make an accurate diagnosis and prognosis. […] Even after a cerebral palsy diagnosis and prognosis, it can still be helpful to get a second opinion. The symptoms of cerebral palsy may be similar to those of other conditions. […] Getting a second opinion can confirm a cerebral palsy diagnosis or reveal that your child actually has a different condition. It can also give you an increased understanding of your child’s condition and its severity, allowing you to pursue the most effective treatments.

• #8 Azthena logo with the word Azthena

  https://www.news-medical.net/health/Cerebral-Palsy-Prognosis.aspx

  Factors that affect the life span of a child with cerebral palsy include: key disabilities and the number of impairments, level of severity of impairments, level of restricted mobility, severity of feeding difficulties, presence of seizures, vision problems, intellectual capabilities and severity of mental retardation, respiratory functions. […] To improve the quality of life as well as increase life span in a child with cerebral palsy certain goals need to be adopted.

• #9 Cerebral Palsy Prognosis – What to Expect & Next Steps

  https://www.childbirthinjuries.com/cerebral-palsy/prognosis/

  Most children diagnosed with cerebral palsy can live normal, healthy, and productive lives. This is especially true if they receive ongoing treatments such as medication and therapy. […] If a child’s case of cerebral palsy is severe, their lifespan and quality of life may be decreased. […] Symptoms which can impact a child’s life expectancy include: Restricted mobility, Feeding difficulties, Seizures, Vision or hearing problems, Mental disabilities, Poor respiratory function. […] A two-year-old child with mild cerebral palsy has a 99% chance of living to the age of 20. A two-year-old with severe cerebral palsy may have as low as a 40% chance of living to the age of 20. […] Whether your child’s cerebral palsy is mild or severe, there are many treatments and methods available for improving their quality of life. In severe cases, improving the quality of life may also improve life expectancy.

• #10 Cerebral Palsy Prognosis – Your Child’s Outlook

  https://www.cerebralpalsyguide.com/cerebral-palsy/prognosis/

  This information is useful in a prognosis because it helps evaluate things like the chances of a child with cerebral palsy being unable to walk or having a learning disability. […] According to this report, for example, there is a 2 in 3 chance that a child with CP will be able to walk. […] A child’s prognosis is not set in stone. There have been many cases where children have overcome the odds and learned to walk when they were told they would never be able to. Treatment and physical therapy, complemented with a healthy lifestyle and a positive mindset, are the best ways to improve a child’s prognosis.

• #11 Azthena logo with the word Azthena

  https://www.news-medical.net/health/Cerebral-Palsy-Prognosis.aspx

  Children with mild forms of cerebral palsy have a normal life expectancy. For example, a two year-old child with mild palsy has a 99% chance of living to the age of 20, compared with a patient who has severe disease, where the figure may be as low as 40%. […] If a child is able to sit up unaided at the age of 2, they will eventually be able to walk. If the child is incapable of sitting upright by the age of 4, there little chance that he or she may walk. […] Children with impairment of movement of all four limbs (quadriplegia), severe epilepsy, severe mental retardation and other medical complications like reflux and pulmonary disease have a worse outcome. […] It is difficult to make predictions about prognosis in a child with cerebral palsy before the age of two. The only helping factor is that the disease is non-progressive and usually does not worsen.

• #12 Cerebral Palsy Prognosis – What to Expect & Next Steps

  https://www.childbirthinjuries.com/cerebral-palsy/prognosis/

  Doctors can monitor a child’s developmental milestones to determine the outlook of their condition. For example, if a 2-year-old child can sit up on their own, they will most likely eventually be able to walk. On the other hand, if a 4-year-old child cannot sit up on their own, they will likely never be able to walk. […] Neuroimaging typically accompanies clinical evaluation to determine the best treatment for patients based on their specific condition. […] According to the Life Expectancy Project, a research group at the University of California, the main indicators for determining a person’s cerebral palsy life expectancy are gross motor skills and feeding. This means that as long as a child can eat and move, their life expectancy is no different than that of a person without the condition.

• #13 Cerebral Palsy Prognosis – How to Improve your Child’s Outlook | Trishla Founation

  https://www.trishlafoundation.com/cerebral-palsy/cerebral-palsy-prognosis-prediction/

  The cerebral palsy prognosis depends upon the extent of the brain lesion, the associated medical problems, quality of rehab program timing of rehab intervention. With early intervention, 80% of children can have a good quality of life. […] It is common fact that if absent neck holding at the age of 1 year, sitting balance at 2 years standing balance at 4 years age is not achieved, then a chance of independent walking is rare. […] With the Continuation of physical therapy, good medical assistance walking aid, training in ADL quality of life can be improved to a great extent. […] Kids with mild types of cerebral palsy have an expectancy of normal life. For instance, a two-year-old kid with mild palsy has a 99% possibility of living to the age of 20, and a patient who has an extreme infection, where the figure might be as low as 40%.

• #14 Cerebral Palsy Life Expectancy – How Long Will My Child Live?

  https://www.cerebralpalsyguide.com/cerebral-palsy/prognosis/life-expectancy/

  Cerebral palsy life expectancy depends on the severity of the condition and coexisting medical issues. For this reason, there is no set time frame for the life expectancy of cerebral palsy patients. The life expectancy of cerebral palsy patients is generally the same as someone without the condition. […] Many parents may have concerns about predicting and improving the life expectancy of their child with cerebral palsy. […] Cerebral palsy life expectancy is generally calculated by the severity of a child’s condition. Mobility issues, intellectual disabilities, vision/hearing impairments, and other coexisting conditions can all affect cerebral palsy life spans. […] Children with mild cerebral palsy have a 99% chance of living to 20 years old, whereas children with severe cerebral palsy have a 40% chance, according to Dr. Ananya Mandal.

• #15 Cerebral Palsy Life Expectancy – Lifespan of Children with CP

  https://www.childbirthinjuries.com/cerebral-palsy/prognosis/life-expectancy/

  The majority of children diagnosed with cerebral palsy can expect to live as long as children without the condition. […] Generally, children born with cerebral palsy can expect to live between 30 and 70 years on average. […] There is no cure for cerebral palsy, and the condition lasts for life. However, unlike many other serious health conditions, cerebral palsy does not worsen over time. […] If your child has been diagnosed with a mild to moderate form of cerebral palsy, which is the majority of cases, they will likely have a life expectancy relatively similar to a child born without the condition. […] Medications and therapies can help to extend the lifespan of a child diagnosed with cerebral palsy. […] Although cerebral palsy is a lifelong condition that requires management, children diagnosed with the condition can expect to have relatively normal lifespans.

• #16 Survival and mortality in cerebral palsy: observations to the sixth decade from a data linkage study of a total population register and National Death Index

  https://pmc.ncbi.nlm.nih.gov/articles/PMC6549269/

  Likely duration of survival of children described as having cerebral palsy is of considerable interest to individuals with cerebral palsy, their families, carers, health professionals, health economists and insurers. The aim of this paper is to describe patterns of survival and mortality to the sixth decade in a geographically defined population of people with cerebral palsy stratified according to the clinical description of their impairments in early childhood. […] For 22% of individuals with cerebral palsy with mild impairment survival to 58 years is similar to that of the general population. Since 1990 mortality for those with severe cerebral palsy in Western Australia has tended to shift from childhood to early adulthood. […] The objective of the current paper is to extend our original birth cohort by 16 years, adding births 1995-2011 and considering deaths occurring up to December 2014, thereby extending the period of observation for the earliest registrants well into the 6th decade. Survival is examined by severity of disability and across birth cohorts and compared with that of the general population.

• #17 Survival and mortality in cerebral palsy: observations to the sixth decade from a data linkage study of a total population register and National Death Index

  https://pmc.ncbi.nlm.nih.gov/articles/PMC6549269/

  The increasing rate of early childhood mortality in those with DISAB =9 from one decade to the next for births from the 1950s to 1980s may be the result of the survival to their first birthday (and hence of inclusion in our sample) of increasingly compromised infants as a result of progress in obstetric and neonatal care. […] For 22% of our CP population with the mildest impairments, duration of survival to 58 years does not differ significantly from that of the population but, as anticipated, the SMR increases with increasingly severe impairments. Nonetheless more than 80% have a life expectancy beyond 58 years and longer follow up of population based samples with detailed descriptions of impairments is recommended to obtain a more complete picture of survival with CP. For those with severe and multiple impairments early childhood mortality has tended to decrease for births since 1990 and the majority reach adulthood.

• #18 Prediction Model for Identifying Factors Associated with Epilepsy in Children with Cerebral Palsy

  https://www.mdpi.com/2227-9067/9/12/1918

  Cerebral palsy (CP) is associated with a higher incidence of epileptic seizures. […] The clinical course is not well defined, although epilepsy occurs in up to 90% of children with CP. […] A prediction model, Epi-PredictMed, was implemented to forecast the factors associated with epilepsy. […] Prenatal CP etiology, spasticity, scoliosis, severe intellectual disabilities, poor motor skills, and communication and feeding disorders were associated with epilepsy in children with CP. […] The model scored an average of 82% for accuracy, sensitivity, and specificity. […] The increasing of ET (postnatal > perinatal > prenatal causes), NS, CFCS, GMFCS, ID, SP (Quadriplegia/triplegia > Diplegia > hemiplegia), and EDACS are associated with epilepsy. […] The best regression model score had an accuracy of 74%, a sensitivity of 98%, a specificity of 73%, and a 82% average score.

• #19 Short-term causal effects of common treatments in ambulatory children and young adults with cerebral palsy: three machine learning estimates | Scientific Reports

  https://www.nature.com/articles/s41598-022-11875-5

  Orthopedic and neurological impairments (e.g., muscle contractures, spasticity) are often treated in children and young adults with cerebral palsy (CP). […] Our goal was to estimate the short-term effectiveness of 13 common orthopedic and neurological treatments at four different levels of outcome in children and young adults diagnosed with CP. […] Current treatments have medium effects on body structures, but modest to minimal effects on gait and functional mobility. […] The median ATT of 13 common treatments in children and young adults with CP, measured as Cohens D, bordered on medium at the body structures level (median [IQR]=0.42 [0.05, 0.60]) and became smaller as we moved along the causal chain through specific kinematic deviations (0.21 [0.01, 0.33]), overall kinematic deviations (0.09 [0.03, 0.19]), and functional mobility (-0.01 [-0.06, 0.13]).

• #20 Short-term causal effects of common treatments in ambulatory children and young adults with cerebral palsy: three machine learning estimates | Scientific Reports

  https://www.nature.com/articles/s41598-022-11875-5

  The effects of 13 common treatments in children and young adults with CP were found to be generally small to medium at the body structures level (median [IQR]=0.42 [0.05, 0.60]) and became smaller along the causal chain through specific kinematic deviations (0.21 [0.01, 0.33]), overall kinematic deviations (0.09 [0.03, 0.19]), and functional mobility (-0.01 [-0.06, 0.13]). […] Overall, positive effects (including borderline effects) at the body structures level were observed in 9 of 13 treatments. […] Overall, positive effects at the kinematic parameter level were observed in 8 of 13 treatments (including three borderline effects). […] Positive effects, including borderline effects at the overall kinematic deviations level, were observed in 5 of 13 treatments: selective dorsal rhizotomy, femoral derotation osteotomy, tibial derotation osteotomy, distal femoral extension osteotomy, and hamstrings lengthening. […] Overall, positive effects at the functional mobility level (FAQt) were observed in 3 of 13 treatments, including two treatments with borderline effects. […] The treatment effects reported here may not match the impressions of clinicians and scientists who work with this patient population.

• #21 Care for children and youth with cerebral palsy (GMFCS levels III to V) | Canadian Paediatric Society

  https://cps.ca/en/documents/position/care-for-children-and-youth-with-cerebral-palsy

  For all prognostic conversations, maintaining a strengths-based approach and focusing on a child’s independence and abilities (rather than what they cannot do) are important. […] Selective dorsal rhizotomy (SDR) is a procedure where selected nerve rootlets are severed to modify sensory inputs in the reflex arc, reducing spasticity. […] Benefits of SDR appear to be greatest in individuals with CP GMFCS levels II and III. […] While SDR as an option is controversial for children functioning at GMFCS levels IV and V, some children who have had this surgery experienced improvement in gross motor tasks, and have exceeded their expected natural history. […] Intrathecal baclofen (ITB) treatment involves surgically implanting a reservoir pump and catheter to deliver baclofen to the intrathecal space. ITB can treat dystonia and spasticity in individuals with CP who are functioning at GMFCS levels IV and V. […] Children and youth with cerebral palsy (CP) GMFCS levels III to V should have a developmental and rehabilitative home that provides regular surveillance and monitoring for common health issues and conditions in this population.

• #22 PREDICT-CP: study protocol of implementation of comprehensive surveillance to predict outcomes for school-aged children with cerebral palsy

  https://pmc.ncbi.nlm.nih.gov/articles/PMC5734266/

  The PREDICT-CP study will undertake further comprehensive follow-up of four birth years of children with CP born in Queensland to capture longitudinal data on growth and physical outcomes (motor capacity, muscle and bone health, physical activity, feeding and oropharyngeal function, nutrition), cognition (executive function, educational attainment, communication) and participation, QoL, pain and these are related to costs of healthcare utilisation. […] The quantitative evaluation of early brain structure on MRI and functional status around 2 years will be compared with these comprehensive outcomes at 812 years to build prediction models of CP. […] For children with CP, this unique project will: i) prediction of outcome (brain structure and multiple outcomes); ii) prognostication on functional, cognitive, communication for school attainment; iii) risk factors for musculoskeletal problems (ie, hip, spine deformity and need for surgery) and iv) health outcomes due to sedentary behaviour, body composition, dietary intake and OPD. […] As CP remains the most common childhood physical disability with high lifetime costs, models to predict outcomes and costs of care will inform health provision, social care and tailor data for national funding schemes such as the Australian NDIS.

• #23 PREDICT-CP: study protocol of implementation of comprehensive surveillance to predict outcomes for school-aged children with cerebral palsy | BMJ Open

  https://bmjopen.bmj.com/content/7/7/e014950

  The PREDICT-CP study will undertake further comprehensive follow-up of four birth years of children with CP born in Queensland to capture longitudinal data on growth and physical outcomes (motor capacity, muscle and bone health, physical activity, feeding and oropharyngeal function, nutrition), cognition (executive function, educational attainment, communication) and participation, QoL, pain and these are related to costs of healthcare utilisation. […] The quantitative evaluation of early brain structure on MRI and functional status around 2 years will be compared with these comprehensive outcomes at 812 years to build prediction models of CP. […] Development and implementation of prediction models of outcomes are essential for tailoring interventions (rehabilitation, medical management, orthopaedic surgery, nutritional supplements) and in understanding the likely costs of healthcare.

• #24 Uncovering early predictors of cerebral palsy through the application of machine learning: a case–control study | BMJ Paediatrics Open

  https://bmjpaedsopen.bmj.com/content/8/1/e002800

  Cerebral palsy (CP) is a group of neurological disorders with profound implications for children’s development. The identification of perinatal risk factors for CP may lead to improved preventive and therapeutic strategies. This study aimed to identify the early predictors of CP using machine learning (ML). […] The variables commonly collected during prenatal and perinatal care cannot be used to reliably predict which child will develop cerebral palsy. […] Additional factors extending beyond the variables collected in the process of perinatal care should be considered in future studies for accurate early prediction of cerebral palsy. […] Our final ML model using early perinatal factors could not reliably predict CP in our cohort. Future studies should evaluate models with additional factors, such as genetic and neuroimaging data.

• #25 Uncovering early predictors of cerebral palsy through the application of machine learning: a case–control study | BMJ Paediatrics Open

  https://bmjpaedsopen.bmj.com/content/8/1/e002800

  The poor performance of the ML models in differentiating individuals with CP from those without CP could be attributed to a range of factors. […] Our data suggests that predicting CP from perinatal risk factors is at best unreliable, if not impossible. This emphasises the need for further research in the field on larger datasets in order to allow better CP prediction and evidence-based obstetric preventive measures. […] In conclusion, our study found a limited prognostic value of standard perinatal risk factors for identifying CP. Understanding the complex interplay between potential causative pathways and postneonatal triggers is crucial for the collection of variables that may enhance the prognostic accuracy of ML models and guide effective interventions.

• #26 Azthena logo with the word Azthena

  https://www.news-medical.net/health/Cerebral-Palsy-Prognosis.aspx

  Prognostic information may be gathered using numerous ways. By imaging of the brain and nerves doctors may arrive at a predicted outcome. This is called prognosis based on neuroimaging. […] The child’s final physical and mental abilities, intellectual disabilities help in predicting the outcome and life expectance of the condition. […] Cerebral palsy is not a worsening or degenerative condition but there is no cure for the condition. […] Most children with cerebral palsy can live long, happy and quite normal lives. […] Properly managing a child’s health status may help in optimizing life span according to studies. […] In severe conditions, as well as improper management of the condition, life span may be shortened. […] Associated problems with cerebral palsy include mental retardation, feeding difficulties, seizures, vision impairment, and hearing impairment. These may severely affect life span and quality of life.

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