Long-Term Deterioration of Perceived Health and Functioning in Adults With Cerebral Palsy

Objective: To describe longitudinal change in perceived health, presence of health issues, and functional level in adults with cerebral palsy (CP). Design: Prospective cohort study. Setting: Participants' daily environment. Participants: Adults (N=49) with CP (age range, 35-45y; 27 [55%] men; 36 [75%] spastic) formerly known in pediatric rehabilitation care participated. Interventions: Not applicable. Main Outcome Measures: Postal questionnaires were completed by the adults or their proxies (n=9). Health outcomes included perceived health (adapted from the 36-Item Short Form Health Survey) and presence of health issues such as pain, severe fatigue (dichotomized), and functional level (Barthel Index; walking performance). Results: Over a 10-year period, the percentage of adults with CP worrying about their health increased (29%-54%; P=.008) and those indicating that health problems limit their activities increased (19%-45%; P=.002). In the same period, most adults continued to report good general health (93%-86%; P=.148). Presence of some health issues increased over time, such as pain; severe fatigue was a common health issue at follow-up (32%). Over a 14-year period, mobility and self-care deteriorated (Barthel Index, 17.1±4.8 to 16.3±5.6; P=.007). Walking performance, specifically indoors, declined (83%-71%; P=.010). Conclusions: Adults with CP experienced deterioration in health outcomes in the long term. Most notably, perceived health and functional level decreased. Pain and severe fatigue were the most common health issues in adult CP. More research is required to explore the mechanisms at work in the process of aging in persons with CP. Systematic follow-up of adults with CP appears necessary to timely detect and intervene in health problems and functional decline.

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