INTRODUCTION Quality of life (QOL) is critical in screening and management of chronic medical conditions, including celiac disease (CD). This project aimed to develop a CD-specific pediatric QOL measure ("CDLIFE") with parallel self- and parent-report forms by generating items through concept elicitation interviews, iterative refinement using cognitive debriefing interviews, and evaluating its psychometric properties and validity. METHODS Concept elicitation interviews were conducted to develop items (nine youth ages 8-19 with CD; 10 parents of youth with CD), followed by cognitive interviews with additional stakeholders (three youth with CD, three parents, and eight clinicians), and item administration (parent/youth reports: n=103/102). Analyses included response frequencies, internal consistency reliability, exploratory factor analyses, and correlations with related measures (PROMIS, PEDSQL, and GFD-VAS). RESULTS From concept elicitation interviews, 42 youth and 45 parent items were developed. Cognitive debriefing interviews yielded 36 refined items. Psychometric analyses identified 15 items to remove due to ceiling/floor effects, poor item-to-test correlations; youth-parent mismatch or conceptual mismatch. Total score internal consistency was high (alphas=0.89-0.90). A four-factor model solution had the best fit (Social Impact, External Support, Adaptive Vigilance, Eating Behaviors/Adjustment) with a fifth single-item domain (Financial Resources). The final CDLIFE (21 items) total scores correlated with most related measures in expected directions for parent and youth forms. CONCLUSION The CDLIFE may facilitate insight into CD-specific QOL for youth ages 2-18 years, capturing important dimensions of physical and socioemotional health. Administering the CDLIFE will help identify and track families needing support.

中文翻译：

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开发和验证儿科乳糜泻特异性生活质量测量。


引言 生活质量 （QOL） 对于筛查和管理慢性疾病（包括乳糜泻 （CD））至关重要。该项目旨在通过概念启发访谈生成项目，使用认知汇报访谈进行迭代细化，并评估其心理测量特性和效度，从而开发一种具有并行自我和父母报告表的 CD 特异性儿科 QOL 测量 （“CDLIFE”） 和平行的自我和父母报告表格。方法 进行概念启发访谈以开发项目 （9 名 8-19 岁的青少年患有 CD;10 名患有 CD 的青少年的父母），然后与其他利益相关者 （3 名患有 CD 的青少年、3 名父母和 8 名临床医生）进行认知访谈，以及项目管理 （父母/青少年报告： n=103/102）。分析包括响应频率、内部一致性信度、探索性因子分析以及与相关措施 （PROMIS、PEDSQL 和 GFD-VAS） 的相关性。结果 从概念启发访谈中，开发了 42 个青年项目和 45 个父母项目。认知汇报访谈产生了 36 个精炼项目。心理测量分析确定了 15 个项目，由于天花板/地板效应、项目与测试相关性差而需要删除;青少年与父母的不匹配或概念上的不匹配。总分内部一致性高 （alphas=0.89-0.90）。四因素模型解决方案与第五个单项领域（财务资源）最匹配（社会影响、外部支持、适应性警惕、饮食行为/调整）。最终的 CDLIFE（21 项）总分与家长和青少年表格预期方向的大多数相关措施相关。结论 CDLIFE 可能有助于深入了解 2-18 岁青少年的 CD 特异性 QOL，捕捉身体和社会情绪健康的重要维度。 管理 CDLIFE 将有助于识别和跟踪需要支持的家庭。