Alriksson-Schmidt Ann, Hägglund Gunnar, Rodby-Bousquet Elisabet, Westbom Lena
Department of Clinical Sciences, Lund University, Lund, Sweden.
Centre for Clinical Research, Uppsala University, Central Hospital Västerås, Västerås, Sweden.
J Pediatr Rehabil Med. 2014;7(1):53-61. doi: 10.3233/PRM-140273.
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.
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).
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.
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.
描述为患有脑瘫（CP）的个体在过渡阶段提供医疗保健的过程，并呈现瑞典年轻成年脑瘫患者的生活安排、教育/职业状况以及个人援助使用情况的数据。
对102名参与者（63名男性）进行描述性横断面研究，这些参与者参加了一个名为CPUP的标准化随访项目。数据根据粗大运动功能分类系统（GMFCS）和手动能力分类系统（MACS）进行分析。
参与者中，58人“与父母同住”，29人报告“独立生活”，15人报告“特殊服务住房”。GMFCS各水平之间的生活安排存在差异（p<0.001），20名重度残疾者中有14人与父母同住。70人中有34人报告使用个人援助；援助的使用与GMFCS（p<0.001，r(s)=0.71）和MACS（p<0.001，r(s)=0.70）相关。35人是“学生”，20人“就业”，36人“从事日常活动”，9人“失业”。在就业者中，18人的GMFCS水平为I-II级。
一些患有脑瘫且功能严重受限的年轻成年人能够独立生活——然而，许多人仍与父母同住。尽管许多人是学生，但大量人员失业。儿科和成人医疗保健系统之间存在脱节。CPUP可能有助于使过渡更加顺利。
