Am J Gastroenterol. 2024 Oct 14. doi: 10.14309/ajg.0000000000003132. Online ahead of print.

Shayna Coburn ^1 2, Paige J Trojanowski ¹, Jack Vagadori ¹, Pamela Hinds ^1 2 3, Monique Germone ⁴, Edwin Liu ⁴, Randi Streisand ^1 2, James Bost ^1 2

Author information

¹Center for Translational Research, Children's National Hospital, 111 Michigan Ave NW, Washington, D.C., 20010.

²The George Washington School of Medicine and Health Sciences, 2300 I St NW, Washington, DC 20052.

³Department of Nursing Science, Professional Practice & Quality, Children's National Hospital, 111 Michigan Ave NW, Washington, D.C., 20010.

⁴Digestive Health Institute, Children's Hospital Colorado, 13123 E. 16th Avenue, Aurora, CO 80045/ University of Colorado School of Medicine, 13001 E 17th Pl, Aurora, CO 80045.

Abstract

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.