Exploring the Acceptability of a Community-Enhanced Intervention to Improve Decision Support Partnership

Outcomes1. Describe and understand the current literature gap regarding advanced illness decision-making for patients with chronic kidney disease and their family caregivers.2. Explain how decision support training can be used to positively influence how patients with chronic kidney disease engage in the decision-making process and in future serious illness planning.Key MessageThe results provide preliminary evidence that a decision-support training program can influence patients' engagement with decision-making. Targeted training increased reports of planned treatment-centered conversations with nephrologists and discussing treatment desires with family caregivers. In addition, conversations with family caregivers included values-oriented discussions about illness progression and reports of updates or completion of advanced care planning documentation.IntroductionPatients with advanced chronic kidney disease (CKD) often rely on unpaid family caregivers to help cope and make health-related decisions. Once advanced CKD is diagnosed, patients face numerous health-related decisions. Yet, when dyads are underprepared to navigate and discuss health-related decisions, they can make decisions inconsistent with their expectations for the future, values, and preferences.ObjectiveThis 12-month, 2-phase formative evaluation intervention pilot study guided by a multiphase optimization strategy and community-engaged research principles aimed to explore the acceptability of a developed patient component to a decision support training intervention called ImPart (Improving Decisional Partnership of CKD Dyads).MethodsCKD patients and their family caregivers were recruited from an urban, academic medical center in the South. Eligibility criteria for patients included a diagnosis of stage 3 or higher CKD (on chart review), and caregivers participated in interview sessions only if they were unpaid and referred by the enrolled patient. Patients without a caregiver were not eligible. The patient component was lay coach, telephone-delivered, and designed to be administered in 1-2 week intervals for 4 sessions. An interview guide, developed in collaboration with an advisory group, ascertained participants' experiences with the patient component. Caregiver interviews focused on changes in the patient's decision ability or engagement.ResultsTwelve patients and eleven caregivers were interviewed. The program was viewed as "good" or "beneficial." The impact of the component is captured in three central themes – 1) Disease communication deliberate and frequent, 2) Future Planning Activation, and 3) Coaching Relationship.ConclusionThe piloted patient component was successfully delivered, acceptable to use, and found to promote enhanced disease and future planning communication. We plan to pilot the full dyadic intervention to assess feasibility, acceptability, and preliminary efficacy on patient and caregiver outcomes - decision conflict, coping, and well-being.KeywordsShared Decision Making / Advance Care PlanningScientific Research