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Title: What is health-related quality of life? Perspectives from pediatric and adult diabetes care providers

item CAO, VIENA - Texas Children'S Hospital
item ESHTEHARDI, SAHAR - Texas Children'S Hospital
item MCKINNEY, BRETT - Indiana University School Of Medicine
item ANDERSON, BARBARA - Baylor College Of Medicine
item MARRERO, DAVID - Texas Children'S Hospital
item Thompson, Deborah - Debbe
item HILLIARD, MARISA - Texas Children'S Hospital

Submitted to: Meeting Abstract
Publication Type: Abstract Only
Publication Acceptance Date: 2/28/2018
Publication Date: 4/10/2018
Citation: Cao, V.T., Eshtehardi, S.S., Mckinney, B.M., Anderson, B.J., Marrero, D.G., Thompson, D.J., Hilliard, M.E. 2018. What is health-related quality of life? Perspectives from pediatric and adult diabetes care providers [abstract]. Texas Children's Hospital 2018 Pediatric Research Symposium. April 10, 2018; Houston, TX. Poster Presentation.

Interpretive Summary:

Technical Abstract: While health-related quality of life (HRQOL) is gaining recognition as an important patient-reported outcome in clinical care and research, an understanding of how diabetes care providers define HRQOL or apply it in practice has not been established. The purpose of this study was to characterize the key components of HRQOL for youth and adults with type 1 diabetes from the perspective of diabetes care providers. Clarification of this construct will help guide efforts to more accurately measure HRQOL and integrate HRQOL assessment and intervention into routine clinical care. As part of a larger qualitative study on diabetes-specific HRQOL, semi-structured qualitative interviews were conducted with 8 diabetes care providers (5 pediatric providers, 3 adult providers, 62.5% male) via focus groups or individually. Interviews were audio-recorded, transcribed, and coded to derive common themes. When asked to describe HRQOL, providers identified three major components of diabetes-specific HRQOL: (1) their patients' day-to-day functioning, including the degree to which diabetes hindered their ability to carry out everyday life activities, and its impact on their general emotional well-being; (2) their patients' medical management, including engagement in diabetes self-management behaviors and the presence of hypo/hyperglycemia and health complications; and (3) the impact of diabetes on their patients' personal relationships, including its impact on the HRQOL of their parents or partners. Providers described three aspects of HRQOL in youth and adults with type 1 diabetes: everyday activities, medical/clinical considerations, and interpersonal/family relationships. This extends the HRQOL literature from other populations with chronic conditions, which has not emphasized provider perceptions of HRQOL, has primarily identified medical domains such as disease-specific symptoms and complications, and provides little information about the HRQOL of other family members. Together with findings about patient and family perspectives on HRQOL from the larger study, the current findings about how diabetes care providers conceptualize type 1 diabetes-specific HRQOL are a necessary first step to help guide clinical processes to routinely assess and enhance diabetes-specific HRQOL from early childhood through late adulthood.