PURPOSE Chronic fatigue syndrome (CFS)/myalgic encephalopathy (ME) is relatively common in children and is disabling at an important time in their development. This study aimed to develop a conceptual framework of paediatric CFS/ME using the patient-perspective to ensure that the content of a new outcome measure includes the outcomes most important to young people. METHODS We developed a child-centred interactive card ranking exercise that included health-related quality of life (HRQoL) outcomes identified from a previous review of the literature as well as qualitative work. Adolescents and their parents selected and ranked the outcomes most important to them and discussed each outcome in further detail. Adolescents were purposively sampled from a single specialist paediatric CFS/ME service in England. Interviews were audio recorded and transcribed verbatim, and thematic framework analysis was used to develop the final conceptual framework. RESULTS We interviewed 43 participants in which there are 21 adolescents, 12-17 years of age with mild-moderate CFS/ME and their parents (20 mothers and 2 fathers). 'Symptoms', 'tiredness', 'payback and crashing' and 'activities and hobbies' were ranked most important to improve by both children and parents. Children ranked 'school' higher than parents and parents ranked 'mood' higher than children. A youth- specific CFS/ME conceptual framework of HRQoL was produced that included 4 outcome domains and 11 subdomains: sleep, tiredness, problems concentrating, individual symptoms, fluctuation and payback, daily and general activities, participation in school, leisure and social life, mood, anxiety and self-esteem. CONCLUSIONS An interactive card ranking exercise worked well for adolescents aged 12-17 to elicit the most important outcomes to them and explore each domain in further detail. We developed a final conceptual framework of HRQoL that forms the basis of a new paediatric patient-reported outcome measure (PROM) in CFS/ME.

中文翻译：

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开发概念框架以支持小儿慢性疲劳综合征/肌病性脑病（CFS / ME）中与健康相关的生活质量评估指标：通过卡片排名优先。

目的慢性疲劳综合症（CFS）/肌性脑病（ME）在儿童中相对常见，并在儿童发展的重要时刻致残。这项研究旨在利用患者的观点建立儿童CFS / ME的概念框架，以确保新结果指标的内容包括对年轻人最重要的结果。方法我们开发了以儿童为中心的互动式卡片排名练习，其中包括从先前文献回顾和定性工作中发现的健康相关生活质量（HRQoL）结果。青少年及其父母选择了对他们来说最重要的结果并进行了排名，并进一步详细讨论了每个结果。目的是从英格兰的一家专门的儿科CFS / ME服务中抽取青少年。访谈是录音和逐字记录的，主题框架分析用于制定最终的概念框架。结果我们采访了43位参与者，其中21位12-17岁的青少年，轻度中度CFS / ME及其父母（20位母亲和2位父亲）。对于孩子和父母来说，“症状”，“疲倦”，“回报和崩溃”以及“活动和嗜好”被认为是最重要的。儿童在“学校”中的排名高于父母，而父母在“情绪”中的排名高于儿童。制定了针对青年的HRQoL CFS / ME概念框架，其中包括4个结果域和11个子域：睡眠，疲倦，注意力集中，个体症状，波动和回报，日常和一般活动，上学，休闲和社交生活，情绪，焦虑和自尊。结论交互式纸牌排名练习对12-17岁的青少年非常有用，可以为他们得出最重要的结果，并进一步详细研究每个领域。我们开发了HRQoL的最终概念框架，该框架构成了CFS / ME中新的儿科患者报告的结局指标（PROM）的基础。