Ageing with cerebral palsy comes with deterioration of health and functioning

Abstract

© 2018 Introduction/Background: Nowadays the majority of persons with cerebral palsy (CP) is of adult age. During the lifespan, adults with CP may face deterioration of health and functioning, which sets a new research area in Physical and Rehabilitation Medicine. Material and method: A representative Dutch cohort of adults with CP formerly known in pediatric rehabilitation care (n = 88) completed assessments at baseline (21–31 y), 4-y and 14-y follow-up (35–45 y). At 14-y follow-up (n = 49) 55% was male, 75% had spastic CP, 22% intellectual disability. Repeated measurements over time addressed the primary outcomes: (A) functional level (Barthel index; walking performance), (B) perceived health and health issues (SF-36 general health (adapted); pain, severe fatigue) and (C) employment status and work hrs/wk. Longitudinal change was explored using generalized estimating equations (GEE) and proportions of change analyses. Results: Over a 14-year period, an increasing proportion of adults with CP worried about their health (29–54%, P = 0.008) or indicated that health problems limit their activities (19–45%, P = 0.002), despite the majority continued to report to feel usually healthy (94–86%; P = 0.15). Presence of some health issues, such as pain, increased with ageing. Also, independence in mobility and self-care decreased (Barthel Index 17.1 (4.8)–16.3 (5.6), P = 0.007), specifically for walking indoors. Adults with CP were less often employed than the general population (38–45% versus 69–86%, P < 0. 001), although employment rate was stable over time. In the same period, work hours/week declined (35.0 (7.9)–31.2 (10.3), P = 0.03). Conclusion: On the long-term, adults perceived an increasing impact of CP, with early deterioration of health problems, functional level and work intensity. Their employment rate was consistently low up to age 45. Systematic monitoring of individuals aging with CP is required to better understand the growing impact of this condition with ageing, and to provide timely interventions.