Article

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.
CI - Copyright (c) 2017 American Congress of Rehabilitation Medicine. Published by
Elsevier Inc. All rights reserved.

Langue : ANGLAIS