Pettersson Katina, Rodby-Bousquet Elisabet
Centre for Clinical Research, Uppsala University/Region Västmanland, Västerås, Sweden.
Department of Clinical Sciences, Lund University, Lund, Sweden.
Front Neurol. 2021 Oct 21;12:749389. doi: 10.3389/fneur.2021.749389. eCollection 2021.
To analyse the living conditions and social outcomes (housing, engagement in employment or higher education, access to personal assistance and having a partner) in adults with cerebral palsy (CP) relative to their age, sex, communication ability, and motor skills. Cross-sectional registry-based study of 1,888 adults (1,030 males/858 females) with CP in the Swedish CP follow-up programme, median age 25 years (range 16-78 y). Type of housing, occupation, access to personal assistance and having a partner were analysed relative to their age, sex, and the classification systems for Gross Motor Function (GMFCS) and Communication Function (CFCS). Binary logistic regression models were used to calculate odds ratios (OR) for independent living, competitive employment, and having a partner. Most of the 25- to 29-year olds (55.6%) lived independently, increasing to 72.4% in 40- to 49-year olds, while the majority (91.3%) of those under 20 years lived with their parents. Independent living was almost equal in adults at GMFCS levels I (40.2%) and V (38.6%). This parity was explained by access to personal assistance, which increased with higher GMFCS and CFCS levels. Personal assistance of >160 hours/week was associated with a high probability of independent living (OR 57). In the age span 20-64 years, 17.5% had competitive employment and 45.2% attended activity centres for people with intellectual disabilities. In the younger age group up to 24 years old, 36.9% went to mainstream/higher education and 20.5% went to special schools. In total, 13.4% had a partner and 7.8% lived together. Slightly more women than men had a partner, and most individuals were classified at CFCS level I. Only one in eight adults with CP has a partner, and one in six has competitive employment. Access to personal assistance is the single most important factor for independent living. It is vital to support adults with CP throughout their lifespan to achieve the best possible outcomes in all aspects of life.
分析成年脑瘫患者的生活条件和社会状况（住房、就业或接受高等教育情况、获得个人协助情况以及是否有伴侣）与其年龄、性别、沟通能力和运动技能之间的关系。在瑞典脑瘫随访项目中，对1888名成年脑瘫患者（1030名男性/858名女性）进行基于登记处的横断面研究，中位年龄25岁（范围16 - 78岁）。分析了住房类型、职业、获得个人协助情况以及是否有伴侣与患者年龄、性别、粗大运动功能分类系统（GMFCS）和沟通功能分类系统（CFCS）之间的关系。使用二元逻辑回归模型计算独立生活、竞争性就业和有伴侣的比值比（OR）。25至29岁的人群中，大多数（55.6%）独立生活，40至49岁人群中这一比例增至72.4%，而20岁以下的大多数（91.3%）与父母同住。GMFCS I级（40.2%）和V级（38.6%）的成年患者独立生活情况几乎相同。这种平等是由于获得个人协助的情况，随着GMFCS和CFCS水平的提高而增加。每周获得超过160小时个人协助与独立生活的高概率相关（OR 57）。在20至64岁年龄段，17.5%的人有竞争性就业，45.2%的人参加智障人士活动中心。在24岁及以下的较年轻年龄组中，36.9%的人进入主流/高等教育机构，20.5%的人进入特殊学校。总体而言，13.4%的人有伴侣，7.8%的人同居。有伴侣的女性略多于男性，大多数人被归类为CFCS I级。每八名成年脑瘫患者中只有一人有伴侣，每六人中有一人有竞争性就业。获得个人协助是独立生活的最重要单一因素。在成年脑瘫患者的整个生命周期中提供支持，以在生活的各个方面实现尽可能好的结果至关重要。
