Elema Agnes, Zalmstra Trees A L, Boonstra Anne M, Narayanan Unni G, Reinders-Messelink Heleen A, V D Putten Annette A J
Department of Rehabilitation Medicine, University Medical Centre Groningen, Groningen, The Netherlands.
Stichting Omega, Amsterdam, The Netherlands.
Acta Paediatr. 2016 Sep;105(9):e419-25. doi: 10.1111/apa.13493. Epub 2016 Jun 29.
This was the first study to investigate the factors associated with health-related quality of life (HRQoL) in nonambulatory children with cerebral palsy (CP), based on a HRQoL measure specifically developed for this population.
The Dutch version of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD-DV) was used to measure HRQoL. It was completed by 66 parents of 47 boys and 19 girls with nonambulatory CP aged between five and 18 years with gross motor function classification system (GMFCS) levels of IV and V. Factors measured were the child's motor and cognitive impairments, comorbidities, pain, parents' education and occupations and family structure. Multiple linear regression analyses were used to determine the significant factors and the relative contribution of these factors to the CPCHILD-DV scores.
The most important factors associated with poorer HRQoL scores were pain and hospital admissions in the previous six months. Other factors were as follows: increased GMFCS level, feeding by gastrostomy tube, inability to communicate verbally, cognitive impairment, poor seizure control and higher parents' educational qualifications.
Pain and hospital admissions were the most important factors that were negatively associated with HRQoL in nonambulatory children with CP between five to 18 years.
这是第一项基于专门为此人群开发的健康相关生活质量（HRQoL）测量方法，调查非步行型脑瘫（CP）儿童健康相关生活质量影响因素的研究。
使用荷兰版的照顾者优先事项和儿童残疾生活健康指数（CPCHILD-DV）来测量健康相关生活质量。该指数由66位家长完成，他们的孩子年龄在5至18岁之间，患有非步行型脑瘫，包括47名男孩和19名女孩，其粗大运动功能分类系统（GMFCS）水平为IV级和V级。测量的因素包括儿童的运动和认知障碍、合并症、疼痛、父母的教育程度和职业以及家庭结构。采用多元线性回归分析来确定显著因素以及这些因素对CPCHILD-DV分数的相对贡献。
与较差的健康相关生活质量分数相关的最重要因素是疼痛和过去六个月内的住院情况。其他因素如下：GMFCS水平升高、通过胃造瘘管进食、无法言语交流、认知障碍、癫痫控制不佳以及父母较高的教育水平。
疼痛和住院是5至18岁非步行型脑瘫儿童健康相关生活质量的最重要的负相关因素。
