Coburn Shayna, Trojanowski Paige J, Vagadori Jack, Hinds Pamela, Germone Monique, Liu Edwin, Streisand Randi, Bost James
Center for Translational Research, Children's National Hospital, Washington, District of Columbia, USA.
The George Washington School of Medicine and Health Sciences, Washington, District of Columbia, USA.
Am J Gastroenterol. 2025 May 1;120(5):1116-1126. doi: 10.14309/ajg.0000000000003132. Epub 2024 Oct 14.
Quality of life (QOL) is critical in screening and management of chronic medical conditions, including celiac disease (CD). The aim of this project was to develop a CD-specific pediatric QOL measure (Celiac Disease Life Inventory of Family Experiences [CDLIFE]) with parallel self-report and parent-report forms by generating items through concept elicitation interviews, iterative refinement using cognitive debriefing interviews, and evaluating its psychometric properties and validity.
Concept elicitation interviews were conducted to develop items (9 youth ages 8-19 years with CD; 10 parents of youth with CD), followed by cognitive interviews with additional stakeholders (3 youth with CD, 3 parents, and 8 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 (Patient-Reported Outcomes Measurement Information System, Pediatric Quality of Life Inventory, and Gluten-Free Diet-Visual Analog Scale).
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, and youth-parent mismatch or conceptual mismatch. Total score internal consistency was high (αs = 0.89-0.90). A 4-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.
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.
生活质量（QOL）在慢性疾病（包括乳糜泻（CD））的筛查和管理中至关重要。本项目的目的是通过概念激发访谈生成项目、使用认知反馈访谈进行迭代完善，并评估其心理测量特性和有效性，从而开发一种针对乳糜泻的儿科生活质量测量工具（乳糜泻家庭经历生活量表[CDLIFE]），并配有平行的自我报告和家长报告表格。
进行概念激发访谈以开发项目（9名8 - 19岁患有乳糜泻的青少年；10名患有乳糜泻青少年的家长），随后对其他利益相关者进行认知访谈（3名患有乳糜泻的青少年、3名家长和8名临床医生）并进行项目施测（家长/青少年报告：n = 103/102）。分析包括反应频率、内部一致性信度、探索性因素分析以及与相关测量工具（患者报告结局测量信息系统、儿科生活质量量表和无麸质饮食视觉模拟量表）的相关性。
通过概念激发访谈，开发了42个青少年项目和45个家长项目。认知反馈访谈产生了36个经过完善的项目。心理测量分析确定了15个因天花板/地板效应、项目与测试的相关性差以及青少年 - 家长不匹配或概念不匹配而需删除的项目。总分的内部一致性较高（α系数 = 0.89 - 0.90）。一个四因素模型解决方案拟合最佳（社会影响、外部支持、适应性警惕、饮食行为/调整），还有一个单项目的第五个领域（财务资源）。最终的CDLIFE（21个项目）总分与家长和青少年表格中大多数相关测量工具在预期方向上相关。
CDLIFE可能有助于深入了解2 - 18岁青少年特定于乳糜泻的生活质量，捕捉身体和社会情感健康的重要维度。使用CDLIFE将有助于识别和跟踪需要支持的家庭。
