Development and Acceptability of a Kidney Therapy Decision Aid for Patients Aged 75 Years and Older: A Design-Based Research Involving Patients, Caregivers, and a Multidisciplinary Team

RATIONALE & OBJECTIVE: Many older adults prefer quality of life over longevity, and some prefer conservative kidney management (CKM) over dialysis. There is a lack of patient-decision aids for adults aged 75 years or older facing kidney therapy decisions, which not only include information on dialysis and CKM but also encourage end-of-life planning. We iteratively developed a paper-based patient-decision aid for older people with low literacy and conducted surveys to assess its acceptability. STUDY DESIGN: Design-based research SETTING AND PARTICIPANTS: Informed by design-based research principles and theory of behavioral activation, a multidisciplinary team of experts created a first version of the patient-decision aid containing 2 components: (1) educational material about kidney therapy options such as CKM, and (2) a question prompt list relevant to kidney therapy and end-of-life decision making. On the basis of the acceptability input of patients and caregivers, separate qualitative interviews of 35 people receiving maintenance dialysis, and with the independent feedback of educated layperson, we further modified the patient-decision aid to create a second version. ANALYTICAL APPROACH: We used descriptive statistics to present the results of acceptability surveys and thematic content analyses for patients’ qualitative interviews. RESULTS: The mean age of patients (n=21) who tested the patient-decision aid was 80 years and the mean age of caregivers (n=9) was 70 years. All respondents held positive views about the educational component and would recommend the educational component to others (100% patients and caregivers). Most of the patients reported that the question prompt list helped them put concerns into words (80% patients and 88% caregivers) and would recommend the question prompt list to others (95% patients and 100% caregivers). LIMITATIONS: Single-center study CONCLUSIONS: Both components of the patient-decision aid received high acceptability ratings. We plan to launch a larger effectiveness study to test the outcomes of a decision-supporting intervention combining the patient-decision aid with palliative care-based decision coaching.