Setting the Agenda: Empowering people with CKD in rural America through participatory research to develop, implement and trial a clinical visit agenda-setting intervention - People living in rural areas with chronic kidney disease (CKD) experience under-studied 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. 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, patient-centered 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 better adherence to medication regimens. Aim 1 of this training and research program is to co-adapt an existing general 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 care partners and their clinicians, revising the agenda-setting intervention based on their feedback. Aim 2 is to determine the feasibility and preliminary efficacy of the agenda-setting intervention for patients, care partners and clinicians. This will consist of an open pilot (n=30), followed by a pilot stepped wedge randomized controlled trial (RCT) (n=108) with three sequences and three clusters of physicians. Preliminary efficacy outcomes include self-advocacy (primary) and utilization (secondary). Implementation outcomes include use of intervention during trial period (primary) and clinician intent to use it after the trial period (secondary). The goal of the training program is to produce an independent investigator equipped to design, trial, and implement interventions to improve experiences for rural-residing Americans with advanced CKD (stages 4-5). Training will cover four domains: 1) rural health experiences, 2) CKD serious illness communication, 4) implementation science, and 3) RCTs.
