S09A - Impact of Diabetes Self-Management Education and Support on Quality-of-Life Outcomes in Youth with Diabetes

Key Takeaways of Your Research: 1. Assessment of quality of life-impacting domains of self-management quality of life measures (generic and diabetes-specific) is important in informing person-centered approaches that can be used for tailoring diabetes care, education, and support of young people with diabetes. 2. Holistic evaluation of self-reported quality of life, including evaluation of subscale data (e.g., behavioral health, family dynamics, school and social considerations, anxiety, and worry), is needed for more focused assessment of quality of life in the care and management of youth with T1D and T2D. 3. Although a growing population of people with diabetes, there is a significant gap in the randomized controlled trial research specific to the impact of diabetes self-management education on self-reported quality of life in this population.

Background/Purpose: Diabetes prevalence among youth is increasing. The unique physiologic and social dynamics of childhood and adolescence complicate diabetes self-management. The National Quality Forum emphasizes quality of life (QoL) as a critical humanistic outcome of healthcare delivery, including diabetes self-management education and support (DSMES). The purpose of this study was to describe the state of the science for effects of DSMES on self-reported QoL in youth with diabetes. Research Hypothesis and/or Research Questions and Specific

Aims: The primary objective of this modified Cochrane method systematic review was to explore and report evidence and gaps in the literature examining effects of DSMES as described in randomized controlled trials (RCTs) on self-reported QoL in youth with type 1 diabetes (T1D) and type 2 diabetes (T2D). Methods/Methodology: Following structured searches in relevant databases, two reviewers independently conducted three-tiered articles review; inclusion criteria: 1) RCT; 2) ADCES7 Self Care Behavior interventions directed at youth participants; 3) established QoL measure; 4) published in English between January, 2007 - March, 2020. Retain/reject disagreements were discussed to consensus. Retained study data were extracted and methodological quality was assessed.

Results: Twelve reports (11 studies) met inclusion criteria with one focusing on type 2 diabetes (T2D), five occurring in the United States (US), and participant ages ranging from 8 to 16 years. There was heterogeneity in study settings, ADCES7 Self-Care Behavior component(s), interventionist types, and intervention duration/ follow-up. Only one US study specified a DCES interventionist; limited reports described recognized DSMES curricula. Six studies specified QoL as a primary outcome, with four demonstrating statistically significant changes in QoL. Over half (n=6) of studies applied generic and/or diabetes-specific versions of the PedsQL measure for children and parents. Although A1C improved in intervention groups, none reported an association between QoL and metabolic outcomes. Conclusions (Impact on Diabetes Care and Education): Evaluating DSMES effects beyond A1C in youth, to include patient-reported outcome assessments that include relevant domains of QoL, is imperative. This systematic review provided preliminary understanding of the knowledge gap for what is known and remains unexplored for measuring the impact of DSMES on QoL in youth with diabetes. Notably, the effects of DSMES on QoL in youth with T2D is a significant research gap. Source of Funding for this Research: The research was supported by the Association of Diabetes Care and Education Specialists as part of the contributions of the Research Committee.