Defining health-related quality of life for young wheelchair users: A qualitative health economics study

BackgroundWheelchairs for children with impaired mobility provide health, developmental and psychosocial benefits, however there is limited understanding of how mobility aids affect the health-related quality of life of children with impaired mobility. Preference-based health-related quality of life outcome measures are used to calculate quality-adjusted life years; an important concept in health economics. The aim of this research was to understand how young wheelchair users and their parents define health-related quality of life in relation to mobility impairment and wheelchair use.MethodsThe sampling frame was children with impaired mobility (≤18 years) who use a wheelchair and their parents. Data were collected through semi-structured face-to-face interviews conducted in participants’ homes. Qualitative framework analysis was used to analyse the interview transcripts. An a priori thematic coding framework was developed. Emerging codes were grouped into categories, and refined into analytical themes. The data were used to build an understanding of how children with impaired mobility define health-related quality of life in relation to mobility impairment, and to assess the applicability of two standard measures of health-related quality of life.ResultsEleven children with impaired mobility and 24 parents were interviewed across 27 interviews. Participants defined mobility-related quality of life through three distinct but interrelated concepts: 1) participation and positive experiences; 2) self-worth and feeling fulfilled; 3) health and functioning. A good degree of consensus was found between child and parent responses, although there was some evidence to suggest a shift in perception of mobility-related quality of life with child age.ConclusionsYoung wheelchair users define health-related quality of life in a distinct way as a result of their mobility impairment and adaptation use. Generic, preference-based measures of health-related quality of life lack sensitivity in this population. Development of a mobility-related quality of life outcome measure for children is recommended.背景 移动功能受损儿童使用轮椅可获得健康、发育及社会心理层面的获益，但目前学界对移动辅助器具如何影响该群体的健康相关生活质量（health-related quality of life）尚缺乏充分认知。基于偏好的健康相关生活质量结局量表被用于计算质量调整生命年（quality-adjusted life years），其为健康经济学中的重要概念。本研究旨在探究青少年轮椅使用者及其家长如何结合移动功能受损与轮椅使用情况，界定健康相关生活质量的内涵。 方法 本研究的抽样框架为使用轮椅的移动功能受损儿童（年龄≤18岁）及其家长。研究数据通过在受试者家中开展的半结构化面对面访谈收集。采用质性框架分析法对访谈转录文本进行分析：首先构建先验主题编码框架，将涌现出的编码归类分组并细化为分析性主题；最终基于该数据明确移动功能受损儿童如何结合自身移动功能受损与轮椅使用情况界定健康相关生活质量，并评估两款通用健康相关生活质量量表的适用性。 结果 本研究共开展27次访谈，受访对象为11名移动功能受损儿童与24名家长。受试者通过三个既相互独立又彼此关联的维度界定移动相关生活质量：1）参与度与正向体验；2）自我价值与成就感；3）健康与功能状态。儿童与家长的应答呈现较高一致性，但部分证据显示，随着儿童年龄增长，其对移动相关生活质量的认知会发生变化。 结论 青少年轮椅使用者因自身移动功能受损及辅助器具适配使用，会以独特的方式界定健康相关生活质量。通用型基于偏好的健康相关生活质量量表对该群体缺乏足够的灵敏度，因此建议开发针对儿童的移动相关生活质量结局量表。