Shared Decision Making in Health Care Visits for CKD: Patients' Decisional Role Preferences and Experiences

Rationale & Objective: Research on shared decision making (SDM) in chronic kidney disease (CKD) has focused almost exclusively on the modality of kidney replacement treatment. We explored what other CKD decisions are recognized by patients, what their preferences and experiences are regarding these decisions, and how decisions are made during their interactions with medical care professionals. Study Design: Cross-sectional study.Setting & Participants: Patients with CKD receiving (outpatient) care in 1 of 2 Dutch hospitals.Exposure: Patients' preferred decisional roles for treatment decisions were measured using the Control Preferences Scale survey administered after a health care visit with medical professionals. Outcome: Number of decisions for which patients experienced a decisional role that did or did not match their preferred role. Observed levels of SDM and motivational interviewing in audio recordings of health care visits, measured using the 4-step SDM instrument (4SDM) and Motivational Interviewing Treatment Integrity coding tools.Analytical Approach: The results were characterized using descriptive statistics, including differences in scores between the patients' experienced and preferred decisional roles.Results: According to the survey (n = 122) patients with CKD frequently reported decisions regarding planning (112 of 122), medication changes (82 of 122), or lifestyle changes (59 of 122). Of the 357 reported decisions in total, patients preferred that clinicians mostly (125 of 357) or fully (101 of 357) make the decisions. For 116 decisions, they preferred a shared decisional role. For 151 of 357 decisions, the patients' preferences did not match their experiences. Decisions were experienced as "less shared/patient-directed" (76 of 357) or "more shared/patient-directed" (75 of 357) than preferred. Observed SDM in 118 coded decisions was low (median 4; range, 0 - 22). Motivational inter-viewing techniques were rarely used. Limitations: Potential recall and selection bias, and limited generalizability.Conclusions: We identified multiple discrepancies between preferred, experienced, and observed SDM in health care visits for CKD. Although pa-tients varied in their preferred decisional role, a considerable number of patients expressed a pref-erence for shared decision making for many de-cisions. However, SDM behavior during the health care visits was observed infrequently.