Long‐term course of difficulty in participation of individuals with cerebral palsy aged 16 to 34 years: a prospective cohort study

Aim To determine the long‐term course of difficulty in participation of individuals with cerebral palsy (CP) without intellectual disability between 16 years and 34 years of age. Method One hundred and fifty‐one individuals with CP aged 16 to 20 years were included (63% male, 37% female; Gross Motor...

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Published in:Developmental medicine and child neurology 2019-02, Vol.61 (2), p.194-203
Main Authors: Gorp, Marloes, Van Wely, Leontien, Dallmeijer, Annet J, Groot, Vincent, Ketelaar, Marjolijn, Roebroeck, Marij E
Format: Article
Language:English
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Summary:Aim To determine the long‐term course of difficulty in participation of individuals with cerebral palsy (CP) without intellectual disability between 16 years and 34 years of age. Method One hundred and fifty‐one individuals with CP aged 16 to 20 years were included (63% male, 37% female; Gross Motor Function Classification System [GMFCS] levels I–IV; without intellectual disability). The Assessment of Life Habits questionnaire 3.0 general short form was used up to three times biennially and at 13‐year follow‐up (13‐year follow‐up: n=98). Scores (range 0–10) reflect difficulty and assistance in participation in housing, education and employment, interpersonal relationships, recreation, community life, and responsibilities. Multilevel models were used to determine the course of difficulty in participation by GMFCS level. Results Despite high average participation levels, 41% to 95% of adolescents and young adults with CP experienced difficulty. Difficulty in participation in housing and interpersonal relationships increased from age 16 years onwards and in most other life areas in the mid‐ and late 20s. In adolescents in GMFCS levels III and IV, participation in recreation and community life improved up to age 23 years. Interpretation Individuals with CP experience increasing difficulties in participation in their mid‐ and late 20s. Clinicians should systematically check for participation difficulties in young adults with CP and offer timely personalized treatment. What this paper adds Many individuals with cerebral palsy (CP) aged 16 to 34 years experience difficulty in participation. Difficulty in participation increases in the mid‐ and late 20s for individuals with CP. Participation in recreation/community life improves before age 23 years for those in Gross Motor Function Classification System levels III and IV. Resumen Patrón de dificultad a largo plazo en la participación de individuos con parálisis cerebral de 16 a 34 años: un estudio prospectivo de cohorte Objetivo Determinar el curso de dificultad a largo plazo en la participación de personas con parálisis cerebral (PC) sin discapacidad intelectual entre los 16 y los 34 años de edad. Método Se incluyeron 151 con PC de 16 años a 20 años (63% hombres, 37% mujeres, sistema de clasificación de la función motora gruesa [GMFCS] niveles I‐IV, sin discapacidad intelectual). El cuestionario corto Evaluación general de hábitos de vida 3.0 (Assessment of Life Habits questionnaire 3.0 general short form) se usó
ISSN:0012-1622
1469-8749
DOI:10.1111/dmcn.14004