title: 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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Clinical Sciences, Lund University, Lund, Sweden.
authors.forename: Ann
authors.initials: A
authors.lastname: Alriksson-Schmidt
authors.affiliation: Department of Clinical Sciences, Lund University, Lund, Sweden.
authors.forename: Gunnar
authors.initials: G
authors.lastname: Hägglund
authors.affiliation: Centre for Clinical Research, Uppsala University, Central Hospital Västerås, Västerås, Sweden.
authors.forename: Elisabet
authors.initials: E
authors.lastname: Rodby-Bousquet
authors.affiliation: Department of Paediatrics, Lund University, Skåne University Hospital, Lund, Sweden.
authors.forename: Lena
authors.initials: L
authors.lastname: Westbom
mesh_terms: D000293:Adolescent; D002547:Cerebral Palsy / Q000534:rehabilitation*; D003430:Cross-Sectional Studies; D004185:Disability Evaluation; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D012720:Severity of Illness Index; D013548:Sweden; D060305:Transition to Adult Care / Q000458:organization & administration*; D055815:Young Adult
keywords: Transition; cerebral palsy; young adulthood