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- Title
Assessing Health-Related Quality of Life in Children and Adolescents with Diabetes: Development and Psychometrics of the Type 1 Diabetes and Life (T1DAL) Measures.
- Authors
Hilliard, Marisa E; Minard, Charles G; Marrero, David G; Wit, Maartje de; Thompson, Debbe; DuBose, Stephanie N; Verdejo, Alandra; Monzavi, Roshanak; Wadwa, R Paul; Jaser, Sarah S; Anderson, Barbara J; de Wit, Maartje
- Abstract
<bold>Objective: </bold>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).<bold>Methods: </bold>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.<bold>Results: </bold>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.<bold>Conclusions: </bold>The new T1DAL measures for children and adolescents with T1D are reliable, valid, and suitable for use in care settings and clinical research.
- Subjects
TYPE 1 diabetes; ADOLESCENCE; QUALITY of life; DIABETES in children; PSYCHOMETRICS; PSYCHIATRIC treatment
- Publication
Journal of Pediatric Psychology, 2020, Vol 45, Issue 3, p328
- ISSN
0146-8693
- Publication type
journal article
- DOI
10.1093/jpepsy/jsz083