Abstract
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.
Keywords
List of abbreviations:
CI (confidence interval), CP (cerebral palsy), GMFCS (Gross Motor Function Classification System), MPQ-QLI (McGill Pain Questionnaire-Quality of Life Index)To read this article in full you will need to make a payment
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Article info
Publication history
Published online: April 18, 2017
Footnotes
Supported by the Phelps Foundation for the Spastics (grant no. 2014.016) and the Children's Fund Adriaanstichting (KFA) (grant no. 14.05.08–2014/0112).
Disclosures: none.
Identification
Copyright
© 2017 by the American Congress of Rehabilitation Medicine
