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Development and Validation of a Pediatric Celiac Disease-Specific Quality of Life Measure
Shayna Coburn1,2, Paige J Trojanowski1, Jack Vagadori1
1Center for Translational Research, Children's National Hospital, Washington, District of Columbia, USA.
Insights
The Celiac Disease Life Inventory of Family Experiences (CDLIFE) is a new tool to measure quality of life in children with celiac disease. It helps identify families needing support for their physical and socioemotional health.
Area of Science:
- Pediatric Psychology
- Gastroenterology
- Quality of Life Research
Background:
- Quality of life (QOL) is crucial for managing chronic conditions like celiac disease (CD).
- Existing measures may not fully capture the unique QOL aspects for pediatric CD patients and their families.
- Developing a disease-specific measure is essential for accurate assessment and support.
Purpose of the Study:
- To develop and validate a celiac disease-specific pediatric QOL measure (CDLIFE).
- To create parallel self-report and parent-report forms for comprehensive assessment.
- To evaluate the psychometric properties and validity of the CDLIFE.
Main Methods:
- Concept elicitation and cognitive debriefing interviews with youth, parents, and clinicians.
- Item administration to a large cohort (n=103/102 for parent/youth reports).
- Psychometric analyses including reliability, factor analysis, and convergent validity with related measures.
Main Results:
- Developed 42 youth and 45 parent items, refined to 36 through cognitive debriefing.
- Final 21-item CDLIFE showed high internal consistency (αs = 0.89-0.90).
- A 4-factor model (Social Impact, External Support, Adaptive Vigilance, Eating Behaviors/Adjustment) with a fifth domain (Financial Resources) demonstrated best fit. CDLIFE scores correlated with related measures.
Conclusions:
- The CDLIFE is a valid and reliable measure for assessing QOL in youth (ages 2-18) with CD.
- It captures key physical and socioemotional health dimensions relevant to pediatric celiac disease.
- The CDLIFE can identify and monitor families requiring targeted support.
Introduction:
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.
Methods:
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).
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, 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.
Discussion:
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.
