Assessing Health-Related Quality of Life in Children and Adolescents with Diabetes: Development and Psychometrics of the Type 1 Diabetes and Life (T1DAL) Measures. (29th October 2019)

• Record Type: Journal Article
• Authors: Hilliard, Marisa E; Minard, Charles G; Marrero, David G; de Wit, Maartje; Thompson, Debbe; DuBose, Stephanie N; Verdejo, Alandra; Monzavi, Roshanak; Wadwa, R Paul; Jaser, Sarah S; Anderson, Barbara J
• Is Part Of: Journal of pediatric psychology. Volume 45:Number 3(2020)
• Page Start: 328
• Page End: 339
• Publication Date: 2019-10-29
• Subjects: developmental perspectives -- diabetes -- quality of life; Clinical child psychology -- Periodicals; 618.9289005
• DOI: 10.1093/jpepsy/jsz083
• Languages: English
• ISSNs: 0146-8693

Abstract

Abstract: Objective: To develop and validate new measures of diabetes-specific health-related quality of life (HRQOL) for people with type 1 diabetes (T1D) that are brief, developmentally appropriate, and usable in clinical research and care. Here we report on the phases of developing and validating the self-report Type 1 Diabetes and Life (T1DAL) measures for children (age 8–11) and adolescents (age 12–17). Methods: Measure development included qualitative interviews with youth and parents ( n = 16 dyads) followed by piloting draft measures and conducting cognitive debriefing with youth ( n = 9) to refine the measures. To evaluate the psychometric properties, children ( n = 194) and adolescents ( n = 257) at three T1D Exchange Clinic Network sites completed the age-appropriate T1DAL measure and previously validated questionnaires measuring related constructs. Using psychometric data, the investigators reduced the length of each T1DAL measure to 21 and 23 items, respectively, and conducted a final round of cognitive debriefing with six children and adolescents. Results: The T1DAL measures for children and adolescents demonstrated good internal consistency (α = 0.84 and 0.89, respectively) and test–retest reliability ( r = 0.78 and 0.80, respectively). Significant correlations between the T1DAL scores and measures of general quality of life, generic and diabetes-specific HRQOL, diabetes burden, and diabetes strengths demonstrated construct validity. Correlations with measures of self-management (child and adolescent) and glycemic control (adolescent only) demonstrated criterion validity. Factor analyses indicated four developmentally specific subscales per measure. Participants reported satisfaction with the measures. Conclusions: The new T1DAL measures for children and adolescents with T1D are reliable, valid, and suitable for use in care settings and clinical research.