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

Marisa E Hilliard; Charles G Minard; David G Marrero; Maartje de Wit; Debbe Thompson; Stephanie N DuBose; Alandra Verdejo; Roshanak Monzavi; R Paul Wadwa; Sarah S Jaser; Barbara J Anderson

doi:10.1093/jpepsy/jsz083

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

J Pediatr Psychol. 2020 Apr 1;45(3):328-339. doi: 10.1093/jpepsy/jsz083.

Authors

Affiliations

¹ Department of Pediatrics, Baylor College of Medicine and Texas Children's Hospital.
² Dan L Duncan Institute for Clinical and Translational Research, Baylor College of Medicine.
³ University of Arizona Health Sciences.
⁴ Department of Medical Psychology, Amsterdam UMC, Vrije Universiteit Amsterdam.
⁵ USDA/ARS Children's Nutrition Research Center, Department of Pediatrics, Baylor College of Medicine.
⁶ Jaeb Center for Health Research.
⁷ Center for Endocrinology, Diabetes and Metabolism, Children's Hospital Los Angeles and Keck School of Medicine of University of Southern California.
⁸ Barbara Davis Center for Diabetes, University of Colorado Anschutz Medical Campus.
⁹ Department of Pediatrics, Vanderbilt University Medical Center.

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.

Keywords: developmental perspectives; diabetes; quality of life.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Child
Diabetes Mellitus, Type 1 / psychology*
Factor Analysis, Statistical
Family
Female
Humans
Male
Psychometrics*
Quality of Life*
Reproducibility of Results
Self Report*
Surveys and Questionnaires

Grants and funding

K12 DK097696/DK/NIDDK NIH HHS/United States