Faculty of Medicine, Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
Department of Paediatric Neurology, Division of Paediatric and Adolescent Medicine, Oslo University Hospital, Rikshospitalet, Oslo, Norway.
Child Care Health Dev. 2023 Mar;49(2):373-381. doi: 10.1111/cch.13055. Epub 2022 Sep 6.
The aims of this population-based cross-sectional and longitudinal study were to investigate different aspects of health-related quality of life (HRQoL) in adolescents with cerebral palsy (CP), to define possible changes in HRQoL from childhood to adolescence and to identify factors associated with low HRQoL in adolescence.
Proxy-reports of 64 adolescents, aged 12-17 years, with bilateral CP in GMFCS levels III-V participating in a surveillance programme, included five of the six domains from the HRQoL instrument Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD): (1) Activities of Daily Living and Personal Care, (2) Positioning, Transfer and Mobility, (3) Comfort and Emotions, (5) General Health and (6) Overall Quality of Life, and the two questions on pain from the Child Health Questionnaire (CHQ). Fifty-eight participants comprised the longitudinal sample.
From childhood to adolescence, the mean CPCHILD domain scores decreased slightly in General Health and remained unchanged in the other four domains. In the domain General Health, the number of medications increased, which was the reason for the score decrease. Pain severity increased significantly. Severe motor impairment was associated with low scores in domains 1, 2, 3 and 5, and more severe pain with low scores in domains 2, 3, 5 and 6. A low domain score in childhood was associated with a low score in each corresponding domain in adolescence.
An assessment of HRQoL should be included in CP surveillance programmes because this could identify needs for interventions in individuals with severe CP. This study indicates the importance of improved pain management in both children and adolescents with severe CP.
本基于人群的横断面和纵向研究旨在探讨脑瘫（CP）青少年健康相关生活质量（HRQoL）的不同方面，定义从儿童期到青春期 HRQoL 的可能变化，并确定与青春期 HRQoL 较低相关的因素。
在一项监测计划中，GMFCS 水平 III-V 的双侧 CP 64 名 12-17 岁青少年的代理人报告，包括 HRQoL 工具残疾儿童生活护理者优先事项和健康指数（CPCHILD）的六个领域中的五个：（1）日常生活活动和个人护理，（2）定位、转移和移动，（3）舒适和情绪，（5）总体健康和（6）整体生活质量，以及儿童健康问卷（CHQ）上的两个疼痛问题。58 名参与者构成了纵向样本。
从儿童期到青春期，CPCHILD 领域的平均评分在总体健康方面略有下降，而在其他四个领域则保持不变。在总体健康领域，用药数量增加，这是导致评分下降的原因。疼痛严重程度显著增加。严重运动障碍与 1、2、3 和 5 领域的低评分相关，更严重的疼痛与 2、3、5 和 6 领域的低评分相关。儿童期低领域评分与青春期相应领域的低评分相关。
CP 监测计划应包括 HRQoL 评估，因为这可以确定需要对严重 CP 个体进行干预。本研究表明，严重 CP 的儿童和青少年需要更好地进行疼痛管理。
