Usuba Koyo, Oddson Bruce, Gauthier Alain, Young Nancy L
Evaluating Children's Health Outcomes Research Center, Laurentian University, Sudbury, Ontario, Canada.
School of Human Kinetics, Laurentian University, Sudbury, Ontario, Canada.
Arch Phys Med Rehabil. 2014 Nov;95(11):2071-2077.e1. doi: 10.1016/j.apmr.2014.05.018. Epub 2014 Jun 6.
To describe changes in gross motor function and health-related quality of life (HRQOL) in adults with cerebral palsy (CP).
An 8-year follow-up survey.
Participants who completed the baseline survey in 2003 were invited.
The sample of adults with CP (N=54; response rate=37%) included a "younger group" (group 1; n=31; age, 23-27y; 15 women) and an "older group" (group 2; n=23; age, 33-42y; 10 women).
Not applicable.
The Gross Motor Function Classification System (GMFCS), Self-Rated Health (SRH), the Health Utility Index Mark III (HUI3), and the Assessment of Quality of Life (AQoL).
Eight years after the initial survey, 27% of the participants in the combined group had deteriorations on the GMFCS, 52% on the SRH, 44% on the HUI3, and 25% on the AQoL. Members of group 1 reported stable scores as they made the transition to adulthood, while many of the group 2 members experienced declines, with relative risk of 1.47 (95% confidence interval [CI], 0.16-2.24) on the GMFCS, 1.36 (95% CI, 0.83-2.23) on the SRH, 1.19 (95% CI, 0.66-2.15) on the HUI3, and 3.17 (95% CI, 1.12-9.00) on the AQoL.
Although much attention has focused on the transitions of persons with CP during their late teens and early 20s, this research found that deteriorations in the GMFCS levels and the HRQOL were most evident in adults in their late 20s and 30s. More detailed longitudinal studies are required to evaluate the longer-term health outcomes among persons with CP into their 30s and beyond.
描述成人脑瘫（CP）患者粗大运动功能和健康相关生活质量（HRQOL）的变化。
一项为期8年的随访调查。
邀请了2003年完成基线调查的参与者。
成人脑瘫患者样本（N = 54；回复率 = 37%）包括一个“较年轻组”（第1组；n = 31；年龄23 - 27岁；15名女性）和一个“较年长组”（第2组；n = 23；年龄33 - 42岁；10名女性）。
不适用。
粗大运动功能分类系统（GMFCS）、自评健康（SRH）、健康效用指数Mark III（HUI3）和生活质量评估（AQoL）。
初次调查8年后，合并组中27%的参与者GMFCS水平恶化，52%的参与者SRH恶化，44%的参与者HUI3恶化，25%的参与者AQoL恶化。第1组成员在向成年期过渡时报告分数稳定，而第2组的许多成员经历了下降，GMFCS的相对风险为1.47（95%置信区间[CI]，0.16 - 2.24），SRH为1.36（95% CI，0.83 - 2.23），HUI3为1.19（95% CI，0.66 - 2.15），AQoL为3.17（95% CI，1.12 - 9.00）。
尽管很多注意力都集中在脑瘫患者在青少年后期和20岁出头的过渡阶段，但本研究发现GMFCS水平和HRQOL的恶化在20多岁后期和30多岁的成年人中最为明显。需要更详细的纵向研究来评估脑瘫患者到30多岁及以后的长期健康结局。
