The impact of ageing on adults with cerebral palsy: the results of a national online survey

Abstract

BackgroundCerebral palsy (CP) is one of the most common neurological disorders in children and results in lifelong physical impairments. Adults with CP have approximately the same life expectancy as their non-disabled peers, so helping them to stay healthy throughout the life course will have long-term cost benefits via reductions in hospital admissions, long term care and unemployment rates.AimThis paper reports on a national online survey that explores how adults with CP experience ageing.Design & settingOnline survey given to adults with CP in the UK.MethodThe participants were adults with CP. Items for the online survey were taken from existing self-report measures, with additional items developed for the survey. Several domains of functioning were assessed including mobility, dexterity, fatigue, pain, speech, mental health, swallowing and health maintenance/self-care as well as healthcare usage. Data were analysed using chi-square to examine the relationships between the demographic variables and the survey responses.ResultsThe survey was completed by 395 participants, of which 72.2% were female and approximately 60% under the age of 45. Respondents reported having problems with mobility, pain and fatigue with older participants reporting higher levels of pain and more mobility problems, although the correlations were fairly small. Healthcare usage was surprisingly low.ConclusionWe found that age was associated with a decline in mobility and a higher level of pain, although the relationships were weak. It is possible that the low healthcare usage among our respondents is due to services not being available to respond to their needs.

Looking beyond Body Structure and Function: ICF Foci and Who Is Being Assessed in Research about Adolescents and Young Adults with Cerebral Palsy—A Scoping Review

“…As these tools describe activity, they considerably steered the ICF linking process towards the ICF AP component. Of course, the high number of studies focusing on activities could be due to the fact that, as people with CP age, they tend to experience functional decline and other complications such as pain [ 51 ], and these aspects could impact their activity levels [ 52 ], which makes the understanding of their activity capacities or performance relevant.…”