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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.

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