In the United States, diabetes affects 3.7 million African Americans (AAs) who are more likely to be diagnosed compared to non-Hispanic whites and are at a greater risk for diabetes-related death and disability. Diabetes is the seventh leading cause of death in Wisconsin, incurring an estimated $3.9 billion annually in health care and lost productivity costs. Each year, more than 1,300 people in Wisconsin die from diabetes and many more suffer diabetes-related complications such as heart disease and amputations. This burden is higher among African Americans (AAs) whose hospitalization rates for diabetes-related complications are four times higher than whites. The most important self-management behavior for improving diabetes outcomes is medication adherence, i.e., taking medications according to provider recommendations. Poor medication adherence places a significant economic burden on US healthcare systems, resulting in $290 billion in costs. A nonadherent patient requires three extra medical visits per year, leading to $2000 increased treatment costs annually. In diabetes, the estimated US cost savings due to improving poor adherence is $1.16 billion. Nonadherence is thus a critical societal problem with negative economic consequences and detrimental effects on health and well-being.
Poor adherence to diabetes medicines is common among AAs and contributes to disproportionally worse diabetes outcomes for AAs. AAs have a 25% lower adherence to diabetes medications than non-Hispanic whites. While the reasons for nonadherence are multifactorial, health beliefs, lack of social support, and limited health literacy, are critical factors for AAs. Due to limited access to high quality healthcare, discrimination experiences, and distrust in providers, AAs may have health beliefs that do not align with biomedicine. Existing adherence interventions designed for general populations may be ineffective for AAs because they do not adequately address these fundamental psychosocial factors. The proposed work builds on the investigator's studies of AAs' diabetes experiences and medication adherence. The investigator's previous research showed that AAs felt a loss of autonomy because of diabetes and believed that diabetes was caused by exposure to certain medications. Navigating the healthcare system seemed difficult. Some AAs did not take their medicines because they did not know how to ask their provider questions. AAs wanted peers to support/teach self-advocacy and positive empowerment in patient-provider relationships. Hence, the investigators worked with community/patient stakeholders to develop a prototype 8-week peer-led culturally appropriate intervention to address identified psychosocial/ sociocultural issues and enhance diabetes medication adherence for AAs, called Peers Supporting Health Literacy, Self-Efficacy, Advocacy and Adherence (Peers LEAD).
Typically, peer support occurs through group, nurse and community health worker visits; however, these require expensive professional staff. Peers LEAD offers an innovative, culturally appropriate and more informal, low-cost means of providing peer support with similar benefits. The long-term goal is to decrease diabetes-related morbidity among AAs through culturally appropriate interventions to increase medication adherence. The study objective is to pilot Peers LEAD using a community-based participatory design to examine for feasibility, outcomes including culturally-informed diabetes-health beliefs, diabetes and medication self-efficacy, patient activation (a measure of engagement/empowerment), medication adherence, and blood glucose, and refine Peers LEAD via participant feedback. The central hypothesis is that Peers LEAD will be feasible and effective for AAs with diabetes, leading to improved outcomes in self-efficacy, activation, adherence, and blood glucose. The study aims are:
Aim 1: To pilot PEERS LEAD to test the feasibility and acceptability of the intervention intended to shift negative diabetes-health beliefs to positive, enhance diabetes self-efficacy, and improve adherence, and blood glucose levels. In conjunction with an interdisciplinary team of a physician, pharmacist and diabetes educator who will provide structured education, Peer Ambassador Board (PAB) members will help deliver Peers LEAD, via initial face-to-face and phone/messaging app follow-ups, serving as peer ambassadors (PAs). Peer buddies (PBs) (AAs 30-65 years old with type 2 diabetes and poor medication adherence) will participate in the program, with a target of 10 20 PBs each in Madison and 10 PBs in Milwaukee. PBs will complete surveys and glucose tests assessing changes in outcomes. Interviews and focus groups will be conducted with all PBs and PAs respectively to get feedback on the intervention. The investigators hypothesize that PA/PB feedback will lead to a feasible intervention showing improvement in adherence and glucose levels for the PBs.
Aim 2: To refine PEERS LEAD for AAs with diabetes using feedback from Peer Ambassador Boards and Peer Buddies. The investigators will: (1) establish two PABs, (2) train PAB members as PAs, (3) elicit feedback to refine Peers LEAD.
This study uses a collaborative approach involving patient stakeholders throughout the research process by directly engaging AAs with diabetes to utilize their experience, knowledge and advice. This is the first study to enhance peer support for AAs with diabetes using phone/messaging app technology. This project advances the development of innovative interventions for AAs with diabetes and focuses on social and behavioral constructs identified from the investigator's prior work to influence medication adherence.
Overall Study Design: This pilot research will be conducted in 2 phases using an intervention mixed methods design in which the investigators will test the 8-week Peers Supporting Health Literacy, Self-Efficacy, Advocacy and Adherence (Peers LEAD) intervention in Phase 1, and then examine specific intervention elements for refinement in Phase 2. The rationale for this design is that neither quantitative nor qualitative methods are sufficient in explaining the outcomes of the intervention. Mixing both methods gives a more complete analysis of Peers LEAD. Qualitative results collected during and after the intervention will allow the investigators to further explain the outcomes, examine participant's experiences and modify the methods in a follow-up and/or dissemination study.
