Setting the Agenda: Empowering people with CKD in rural America through participatory research to develop, implement and trial a clinical visit agenda-setting intervention

PROJECT SUMMARY/ABSTRACT People living in rural areas with chronic kidney disease (CKD) experience understudied and under-addressed challenges. U.S. CKD prevalence is higher in rural areas than urban areas, resulting in a critical need to study and improve CKD experiences. Rural-residing people with CKD often have complex,

multi-morbid conditions requiring intensive technological treatment and extensive travel to reach care and services. Location aside, all patients with CKD have difficult-to-manage symptoms and require treatments associated with hefty self-management. As a result, patients with CKD often struggle with disempowerment.

They ask few questions and struggle to self-advocate. In one study, ≈90% of people with CKD reported wishing they had more information about their disease; ≈50% expressed they could not ask informed questions. In advanced CKD (stages 4-5), patients often lack understanding about their disease, making

self-management challenging. Rural-residing individuals with CKD must manage additional logistical challenges with fewer treatment options, services and supports. There are currently few flexibility-designed (in-person and telehealth) interventions to improve the self-advocacy of rural-residing patients with CKD. In

other contexts, however, patient-centered communications interventions such as collaborative agenda-setting have shown promise. Agenda-setting enables clinicians to collaboratively generate and prioritize discussion topics in clinical visits with patients and care partners. Agenda-setting practice is

associated with improved clinician understanding of patients’ concerns, increased patient satisfaction and – notably – better adherence to medication regimens. Aim 1 of this training and research program is to co-adapt an existing generalized visit agenda-setting intervention and co-design an intervention delivery

strategy for rural residents with CKD, their care partners and their clinicians. Using participatory research methods, we will conduct iterative semi-structured cognitive interviews (n=30) with people experiencing CKD, their families and their clinicians, revising the agenda-setting intervention based on their feedback. Aim 2 is

to determine the feasibility and preliminary efficacy of using the agenda-setting intervention for patients, care partners and clinicians. Outcomes include self-advocacy (primary) and utilization (secondary). This will consist of an open pilot (n=30), followed by a pilot stepped wedge randomized controlled trial (RCT) (n=108).

The goal of the training outlined in this proposal is to produce an independent investigator equipped to design, trial, and implement interventions, to improve equity for rural-residing Americans with CKD. Training will cover four domains: 1) rural health equity, 2) CKD serious illness communication,

3) implementation science, and 4) RCTs. The training and experiential learning described will produce an independent investigator committed to improving experiences for rural-residing people with CKD.