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Title: Living with type 1 diabetes: A new approach to assessing diabetes-specific health-related quality of life in youth and parents

item HILLIARD, MARISA - Baylor College Of Medicine
item MINARD, CHARLES - Baylor College Of Medicine
item MARRERO, DAVID - Indiana University School Of Medicine
item DE WIT, MAARTJE - Vu University Medical Center
item Thompson, Deborah - Debbe
item DUBOSE, STEPHANIE - Jaeb Center For Health Research
item VERDEJO, ALANDRA - Jaeb Center For Health Research
item ANDERSON, BARBARA - Baylor College Of Medicine

Submitted to: Meeting Abstract
Publication Type: Abstract Only
Publication Acceptance Date: 11/16/2018
Publication Date: 4/5/2019
Citation: Hilliard, M.E., Minard, C., Marrero, D.G., De Wit, M., Thompson, D.J., Dubose, S., Verdejo, A., Anderson, B.J. 2019. Living with type 1 diabetes: A new approach to assessing diabetes-specific health-related quality of life in youth and parents [abstract]. Society of Pediatric Psychology Annual Conference (SPPAC). April 4-6, 2019; New Orleans, LA. Poster Session 3, Poster 15.

Interpretive Summary:

Technical Abstract: As patient-reported outcomes are increasingly recognized as essential in research and practice, accurate assessment of health-related quality of life (HRQOL) is needed. Limitations of current HRQOL measures for people with type 1 diabetes (T1D) include poor face validity, little tailoring across developmental stages, and focus on T1D-related problems rather than well-being. We created and evaluated new, clinically useful, developmentally-tailored assessments of T1D-specific HRQOL for children through older adults. Draft measures were developed based on qualitative interviews (n=81 people with T1D, n=8 healthcare providers) and piloted (n=41). Psychometric validation data from n=1,438 people with T1D from 6 Type 1 Diabetes Exchange sites included the HRQOL measure (twice, approx. 3 mos. apart), self-report measures (PedsQL Generic Core Scales and Diabetes Module, Satisfaction with Life Scale, Problem Areas in Diabetes, Diabetes Strengths and Resilience, Self-Care Inventory Revised), glucometer downloads, and HbA1c. Exploratory factor analyses (Promax rotation) and psychometric data for the 2 pediatric age-bands (age 8-11, 12-17) are reported. Each measure had a unique combination of 22-24 positive and negative items loading onto 4 scales. Reliability was good: total score internal consistency a range=0.84-0.90, test-retest reliability r range=0.77-0.80. Evidence of construct validity included significant correlations between total scores and measures of general quality of life (r=0.47-0.55), overall HRQOL (r range=0.43-0.52), T1D-specific HRQOL (r=0.68-0.76), T1D strengths (r=0.53-0.61), and T1D burden (r=-0.72-0.73). Criterion validity in adolescents was evidenced by significant correlations with adherence via self-report (r=0.53) and glucometer download (r=0.23) and medical chart-confirmed HbA1c (r=-0.26). These developmentally-relevant, brief T1D-specific HRQOL measures demonstrate strong psychometric properties and are appropriate for use in clinical research and practice. Their design allows continuous measurement of T1D-specific HRQOL and comparison of scores over time, and the clinical usefulness of the content makes them appropriate to guide clinical conversations and care decisions.