Follow-up of individuals with cerebral palsy through the transition years and description of adult life: The Swedish experience

Abstract

OBJECTIVE: To describe the process of providing healthcare through the transition years to individuals with cerebral palsy (CP) and to present data on living arrangements, education/occupation status, and use of personal assistance in young Swedish adults with CP.

METHODS: A descriptive cross-sectional study of 102 participants (63 males) participating in a standardized follow-up program called CPUP. Data were analyzed in relation to the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS).

RESULTS: Of the participants, 58 "lived with parents", 29 reported "independent living", and 15 reported "special service housing". Living arrangements differed among GMFCS levels (p< 0.001) and 14 of 20 with severe disabilities lived with their parents. Thirty-four of 70 reported personal assistance; use of assistance correlated (p< 0.001) with GMFCS ( $r^{s}$ =0.71) and MACS ( $r^{s}$ = 0.70). Thirty five were "students", 20 "employed", 36 in "daily activities", and 9 were "unemployed". Of those employed, 18 had GMFCS levels I-II.

CONCLUSION: Some young adults with CP and severe functional limitations manage independent living – however, many still live with their parents. Although many are students, a large number are unemployed. There is disconnect between the pediatric and adult healthcare systems. CPUP may facilitate in making the transition smoother.