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Title: Living with diabetes: A new approach to assessing health-related quality of life in people with type 1 diabetes over the lifespan

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

Submitted to: Annals of Behavioral Medicine
Publication Type: Abstract Only
Publication Acceptance Date: 11/6/2018
Publication Date: 3/6/2019
Citation: Hilliard, M.E., Minard, C., Marrero, D., De Wit, M., Thompson, D.J., Verdejo, A., Anderson, B.J. 2019. Living with diabetes: A new approach to assessing health-related quality of life in people with type 1 diabetes over the lifespan. Annals of Behavioral Medicine. 53(Suppl 1):S255.

Interpretive Summary:

Technical Abstract: Health-related quality of life (HRQOL) is increasingly recognized as a critical patient-reported outcome in research and practice. However, existing HRQOL measures for people with type 1 diabetes (T1D) are limited by low face validity, minimal tailoring for different developmental stages, and emphasis on health problems and T1D burden rather than comprehensive well-being. We developed and validated a suite of clinically useful, developmentally appropriate instruments to measure T1D-specific HRQOL from childhood through older adulthood. Qualitative interviews with 81 people with T1D and their family members and 8 healthcare providers helped identify core HRQOL themes to assess. Draft measures were piloted with 41 participants. The resulting measures were validated with 1,438 people with T1D from 6 T1D Exchange sites across the U.S., including the HRQOL measure (2 times, approx. 3 mos. apart), age-appropriate measures of relevant constructs (PedsQL Generic Core Scales and Diabetes Module, SF-12, Satisfaction with Life Scale, Problem Areas in Diabetes scale, Self-Care Inventory Revised), and HbA1c. Exploratory factor analyses (Promax rotation) and psychometric data for the 4 adult age-bands (age 18–25, 26–45, 46–60, and >60) are reported here. Each age-band had a unique combination of 27 positive and negative items loading onto 4 or 5 scales. Reliability for all measures was good: total score internal consistency estimates ranged between alpha=0.85–0.88 and test-retest reliability ranged between r=0.80–0.87. Construct validity was demonstrated by significant correlations between the total scores and measures of general quality of life (r=0.40–0.46), overall HRQOL (r range=0.42–0.56), T1D-specific HRQOL (r=0.71–0.72), physical well-being (r=0.30–0.33), mental well-being (r=0.48–0.59), and T1D burden (r=-0.70–0.76). Criterion validity was demonstrated by significant correlations with self-reported adherence (r=0.19–0.43) and medical chart-confirmed HbA1c (r=-0.22–0.36). The new, brief T1D-specific HRQOL measures have developmentally relevant items and subscales and demonstrate strong psychometric properties, making them suitable for use in clinical research and practice. The measures' scoring and design permits longitudinal assessment of T1D-specific HRQOL across the lifespan and comparison of scores over time, and the developmental relevance of the content makes the measures useful to guide clinical conversations and care decisions.