Long-term deterioration of perceived health and functioning in adults with cerebral palsy

Publication date: Available online 18 April 2017
Source:Archives of Physical Medicine and Rehabilitation
Author(s): Joyce L. Benner, Sander R. Hilberink, Thessa Veenis, Henk J. Stam, Wilma M.A. van der Slot, Marij E. Roebroeck
ObjectiveTo describe longitudinal change in perceived health, presence of health issues and functional level in adults with cerebral palsy (CP).DesignProspective cohort study.SettingParticipants who completed baseline assessments in 1996 or 2000 were invited for a long-term follow-up in 2010.ParticipantsForty-nine Dutch adults with CP (age 35-45 years, 55% male, 75% spastic) formerly known in pediatric rehabilitation care.InterventionsNot applicable.Main Outcome MeasuresPostal questionnaires were completed by the adults or their proxies (n=9). Health outcomes included perceived health (adapted from SF-36), presence of health issues such as pain, severe fatigue (dichotomized), and functional level (Barthel Index; walking performance).ResultsOver a 10-year period, the percentage of adults with CP worrying about their health increased (29 to 54%, p=0.008) and those indicating that health problems limit their activities increased (19 to 45%, p=0.002). In the same period the majority continued to report good general health (93 to 86%, p=0.148). 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 (SD 4.8) to 16.3 (SD 5.6), p=0.007). Walking performance, specifically indoors declined (83 to 71%, p=0.010).ConclusionsAdults 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 among persons with CP. Systematic follow-up of adults with CP appears necessary to timely detect and intervene on health problems and functional decline.



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