Date of Graduation

2024

Document Type

Dissertation

Degree Type

PhD

College

School of Public Health

Department

Social and Behavioral Sciences

Committee Chair

Ranjita Misra

Committee Co-Chair

Adam Baus

Committee Member

Danielle Davidov

Committee Member

Christa Lilly

Abstract

Background: West Virginia (WV), a rural state in Appalachia, has the highest type 2 diabetes mellitus (T2DM) prevalence in the United States. Open communication in the patient-provider relationship is an integral part of comprehensive chronic disease management. This is especially true for patients living with T2DM, a disease that requires many complex, daily self-management activities and is associated with increased emotional distress. However, patients living with T2DM are often reluctant to openly share their concerns regarding self-care with their provider. This study aimed to test the effectiveness of the Diabetes and Hypertension Self-Management Program (DHSMP), a 12-week group lifestyle intervention implemented in two WV churches, on improving patients’ self-advocacy and patient-provider regarding their T2DM management.

Methods: The DHSMP utilized health coaches to deliver group educational sessions and support participants (N = 98) in improving self-care behaviors. Using a randomized controlled trial (RCT) design and an integrated explanatory sequential mixed-method approach, the objectives of this study were to: evaluate the impact of the DHSMP at baseline, 12 weeks, & 24 weeks on relevant behavioral (patient self-advocacy, patient-provider communication), clinical (hemoglobin A1c, HbA1c), and psychosocial (diabetes distress) outcomes compared to the enhanced usual care (EUC) control group and to determine the relationships between the outcomes measured (Aim 1); to understand DHSMP participants’ experiences and perceptions of barriers and facilitators to patient-provider communication regarding diabetes self-management and care (Aim 2a); to understand DHSMP participants’ perceptions of DHSMP components that may have influenced their propensity for self-advocacy, and how they communicate their concerns regarding diabetes self-care with their provider(s) (Aim 2b); and to assess qualitative differences in self-advocacy and patient-provider communication based on DHSMP participants’ characteristics using an integrated mixed-method analysis (Aim 3). Differences in outcomes within the intervention and control groups were assessed using paired t-tests and Wilcoxon Signed Rank tests at 12 weeks and 24 weeks from baseline. Generalized estimating equation modeling was used to assess group by time interaction effects for the primary outcome variables controlling for other relevant covariates. Semi-structured interviews (n = 45) and 7 focus groups (n = 25) were also conducted with participants post-program. Qualitative data were coded by four independent coders who used thematic analysis to identify themes and subthemes related to diabetes-specific self-advocacy and communication. Coded qualitative data were then integrated with participants’ quantitative data and were assessed using quote matrices.

Results: A significant increase in patient self-advocacy was noted at 12 weeks (Diff = +11.17; p = 0.021) but was not sustained at 24 weeks for the intervention group (Diff = +0.01; p = 0.746); no significant change in self-advocacy was found in the EUC control group. There was no significant change in patient-provider communication after the intervention for both the intervention and EUC control groups. After controlling for covariates in the model, no significant group by time interaction effects were observed for self-advocacy. However, the EUC control group experienced a small decrease in patient-provider communication at 12 weeks (ß = -0.28, p = 0.017). Patient-provider communication (Est. = 1.50; p < 0.001) and diabetes duration (Est. = 0.04, p = 0.032) were significantly associated with self-advocacy. In addition, self-advocacy (ß = 0.42, p < 0.001), diabetes distress (ß = -0.24, p = 0.022), and educational attainment (ß = -0.29, p = 0.006) were associated with patient-provider communication. In contrast, qualitatively, intervention group participants perceived improvements both in their ability and confidence to communicate with providers their tailored diabetes care needs and preferences, unlike those in the EUC control group. Specifically, participants perceived the ability to self-advocate as important as it fosters partnership with their providers, brings attention to patient concerns, especially related to medication and the psychosocial aspects of T2DM management, and aids patient-provider discussion regarding self-care topics rather than just “the numbers” (HbA1c). Participants also noted that empowerment through education impacted their communication with providers. DHSMP participation improved knowledge about their disease which allowed for better engagement and questions/discussion with providers. On the other hand, provider-related themes included providers being attentive and nonjudgmental, open to patients discussing research or new treatments, and easy accessibility via phone or patient portal messaging as needed. Lastly, no qualitative differences in self-advocacy and patient-provider communication were noted based on participants’ demographic and clinical variables. However, four typologies based on participants’ self-advocacy and patient-provider communication quality were identified and enhanced understanding of the relationship between patient self-advocacy and patient-provider communication.

Discussion: This study is innovative in that it is the first RCT to test the impact of a lifestyle intervention on patient self-advocacy and patient-provider communication regarding diabetes care, management, and related distress. Our study demonstrated a strong relationship between patient self-advocacy skills and patient-provider communication. Furthermore, improved patient-provider communication was associated with reduced diabetes distress and subsequently reduced HbA1c in T2DM patients. These results highlight the importance of patient-provider communication in the psychosocial and clinical aspects of diabetes self-management. Quantitatively, modest improvements in self-advocacy scores were noted among the DHSMP intervention group as compared to the EUC control group at 12 weeks but were not sustained at the 24-week follow-up. However, qualitatively, intervention group participants perceived improvements both in their ability and confidence to communicate with providers their tailored diabetes care needs and preferences, unlike those in the EUC control group. These results suggest that diabetes self-management education (DSME) programs aiming to improve knowledge and skills may not inherently improve patient self-advocacy regarding their T2DM. Therefore, future research should test the additive effect of incorporating self-advocacy skill building and practice in DSME interventions. Lastly, this study confirmed that patient-provider communication quality influences patient self-advocacy, but challenges remain in intervening with providers due to lack of time and high patient volumes. Fortunately, “confidence in being able to obtain attention”, “being involved or assertive in care decisions”, “being prepared with questions”, “having health/diabetes knowledge”, and “being honest with providers” emerged as patient-specific themes that were not found to be dependent on provider communication quality. Therefore, these potentially modifiable patient characteristics should be considered as behavioral targets in future T2DM patient self-advocacy intervention studies.

Embargo Reason

Publication Pending

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