Bray Nathan, Noyes Jane, Harris Nigel, Edwards Rhiannon Tudor
Centre for Health Economics and Medicines Evaluation, Bangor University, Bangor, Gwynedd, United Kingdom.
School of Social Sciences, Bangor University, Bangor, Gwynedd, United Kingdom.
PLoS One. 2017 Jun 15;12(6):e0179269. doi: 10.1371/journal.pone.0179269. eCollection 2017.
Wheelchairs 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.
The 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.
Eleven 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.
Young 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.
为行动不便的儿童提供的轮椅有助于促进其健康、发育并带来心理社会效益，然而，对于行动辅助器具如何影响行动不便儿童的健康相关生活质量，人们了解有限。基于偏好的健康相关生活质量结局指标用于计算质量调整生命年，这是健康经济学中的一个重要概念。本研究的目的是了解年轻轮椅使用者及其父母如何界定与行动障碍和轮椅使用相关的健康相关生活质量。
抽样框架为使用轮椅的行动不便儿童（≤18岁）及其父母。通过在参与者家中进行的半结构化面对面访谈收集数据。采用定性框架分析法对访谈记录进行分析。制定了一个先验主题编码框架。将新出现的代码进行分类，并提炼为分析主题。这些数据用于了解行动不便儿童如何界定与行动障碍相关的健康相关生活质量，并评估两种健康相关生活质量标准指标的适用性。
共进行了27次访谈，采访了11名行动不便儿童和24名家长。参与者通过三个不同但相互关联的概念界定与行动相关的生活质量：1）参与和积极体验；2）自我价值和成就感；3）健康和功能。儿童和家长的回答之间达成了高度共识，尽管有证据表明，随着儿童年龄的增长，对与行动相关生活质量的认知会发生变化。
年轻轮椅使用者因其行动障碍和适应性使用而以独特的方式界定健康相关生活质量。通用的、基于偏好的健康相关生活质量指标在这一人群中缺乏敏感性。建议为儿童制定与行动相关的生活质量结局指标。
