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.
Keywords: Transition; cerebral palsy; young adulthood.