Abstract
KEY POINTS: Clinicians’ uncertainty about the degree to which older patients prefer to engage in decision making remains a key barrier to shared decision making. Most older adults with advanced CKD preferred a collaborative or active role in decision making. BACKGROUND: Older adults with kidney failure face preference-sensitive decisions regarding dialysis initiation. Despite recommendations, few older patients with kidney failure experience shared decision making. Clinician uncertainty about the degree to which older patients prefer to engage in decision making remains a key barrier. METHODS: This study follows a mixed-methods explanatory, longitudinal, sequential design at four diverse US centers with patients (English-fluent, aged ≥70 years, CKD stages 4–5, nondialysis) from 2018 to 2020. Patient preferences for engagement in decision making were assessed using the Control Preferences Scale, reflecting the degree to which patients want to be involved in their decision making: active (the patient prefers to make the final decision), collaborative (the patient wants to share decision making with the clinician), or passive (the patient wants the clinician to make the final decision) roles. Semistructured interviews about engagement and decision making were conducted in two waves (2019, 2020) with purposively sampled patients and clinicians. Descriptive statistics and ANOVA were used for quantitative analyses; thematic and narrative analyses were used for qualitative data. RESULTS: Among 363 patient participants, mean age was 78±6 years, 42% were female, and 21% had a high school education or less. Control Preferences Scale responses reflected that patients preferred to engage actively (48%) or collaboratively (43%) versus passively (8%). Preferred roles remained stable at 3-month follow-up. Seventy-six participants completed interviews (45 patients, 31 clinicians). Four themes emerged: control preference roles reflect levels of decisional engagement; clinicians control information flow, especially about prognosis; adapting a clinical approach to patient preferred roles; and clinicians' responsiveness to patient preferred roles supports patients' satisfaction with shared decision making. CONCLUSIONS: Most older adults with advanced CKD preferred a collaborative or active role in decision making. Appropriately matched information flow with patient preferences was critical for satisfaction with shared decision making. CLINICAL TRIAL REGISTRY NAME AND REGISTRATION NUMBER: Decision Aid for Renal Therapy (DART), NCT03522740.