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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

Author
item HILLIARD, MARISA - Baylor College Of Medicine
item MINARD, CHARLES - Baylor College Of Medicine
item MARRERO, DAVID - University Of Arizona
item DE WIT, MAARTJE - Vrije University
item Thompson, Deborah - Debbe
item DUBOSE, STEPHANIE - Jaeb Center For Health Research
item VERDEJO, ALANDRA - Jaeb Center For Health Research
item MONZAVI, ROSHANAK - University Of Southern California
item WADWA, R - University Of Colorado
item ANDERSON, BARBARA - Baylor College Of Medicine

Submitted to: Journal of Pediatric Psychology
Publication Type: Peer Reviewed Journal
Publication Acceptance Date: 9/23/2019
Publication Date: 10/29/2019
Citation: Hilliard, M.E., Minard, C.G., Marrero, D.G., De Wit, M., Thompson, D.J., Dubose, S.N., Verdejo, A., Monzavi, R., Wadwa, R.P., Anderson, B.J. 2019. Assessing health-related quality of life in children and adolescents with diabetes: Development and psychometrics of the Type 1 Diabetes and Life (T1DAL) measures. Journal of Pediatric Psychology. https://doi.org/10.1093/jpepsy/jsz083.
DOI: https://doi.org/10.1093/jpepsy/jsz083

Interpretive Summary: Health-related quality of life is an important health outcome, particularly in individuals with a chronic condition like type 1 diabetes. It is defined as someone's perception of their well-being with respect to their health status, physical functioning, health-related concerns, social and emotional functioning, and treatment satisfaction. Existing measures have limitations. Brief, clinically relevant, psychometrically sound, and developmentally appropriate measures specific to type 1 diabetes are needed. We developed and evaluated a new diabetes-specific health-related quality of life measure for adults with type 1 diabetes. The "Type 1 Diabetes and Life" (T1DAL) adult measures were created in four age-based versions: Young Adult (age 18-25), Adult-1 (age 26-45), Adult-2 (age 46-60), and Older Adult (age >60). The newly developed measures for adults with type 1 diabetes address many limitations of previous health-related quality of life measures. The developmentally tailored content with consistent scoring across age bands permits longitudinal measurement. This may provide further insight into the relationship between developmental stages and health-related quality of life, and enable researchers and clinicians to identify and address stage-specific needs and issues.

Technical Abstract: Our objective was 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). 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. The T1DAL measures for children and adolescents demonstrated good internal consistency (alpha=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. The new T1DAL measures for children and adolescents with T1D are reliable, valid, and suitable for use in care settings and clinical research.