Engaging Patients and Caregivers to Establish Priorities for the Management of Diabetic Foot Ulcers

Abstract Objective Effective diabetic foot ulcer (DFU) care is stymied by a lack of input from patients and caregivers, thereby reducing treatment adherence and overall quality of care. Our objectives were to capture patient and caregiver perspectives on suffering with a DFU and to improve prioritization of patient-centered outcomes. Methods A DFU-related stakeholder group was formed at an urban tertiary care center. Seven group meetings were held across four months, each lasting about one hour. The meeting facilitator used semi-structured questions to guide each discussion. Topics assessed challenges of the current DFU care system and identified outcomes most important to stakeholders. Meetings were audio recorded and transcribed. Directed and conventional content analyses were used to identify key themes. Results Six patients with diabetes (five with an active DFU), three family caregivers, and one Wound Clinic staff member participated in the stakeholder group meetings. Among the patients, mean age was 61 years, four (67%) were women, five (83%) were either African American or Hispanic, and the mean hemoglobin-A1c was 8.3%. Of the five patients with a DFU, three previously required lower extremity endovascular treatment, and four had undergone at least one minor foot amputation. Overall, stakeholders described how poor communication between medical personnel and patients made the DFU experience difficult. They felt overwhelmed by the complexity of DFU care and were persistently frustrated by inconsistent medical recommendations. Limited resources further exacerbated frustrations and barriers to care. To improve DFU management, stakeholders suggested a centralized healthcare delivery pathway with timely access to a coordinated, multidisciplinary DFU team. Clinical outcomes most valued by stakeholders were: 1) avoiding amputation and 2) maintaining or improving health-related quality of life (comprised of independent mobility, pain control, and mental health). From these themes, we developed a conceptual model to inform DFU care pathways. Conclusions Current DFU management lacks adequate care coordination. Multidisciplinary approaches tailored to the self-identified needs of patients/caregivers may improve adherence. Future DFU-related comparative effectiveness studies will benefit from direct stakeholder engagement and are required to evaluate the efficacy of incorporating patient-centered goals into the design of a multidisciplinary DFU care delivery system.