Patient-sensitive treatment decision-making? preferences and perceptions in a sample of renal patients

Patient participation in various aspects of healthcare is rapidly expanding. However, patients' preferences with regard to participation in treatment decision-making remain relatively under-explored, as does the congruence between such preferences and patients' perceptions of their actual role in decision-making. The aims of this study were to identify and to compare treatment decision-making role preferences and perceptions of the actual decisional role in a sample of renal patients. A cross-sectional survey was conducted at a single regional renal unit in the North of England. A convenience sample of 405 patients was obtained (pre-dialysis N=155; dialysis N=103; transplant N=147). Preferred and perceived role were identified using a card sort technique (choice of five options, active to passive). Rationales for role preference were recorded verbatim. Most patients were found to prefer passive (N=186, 45.9%; 95% Cl 41.2-50.9) or collaborative (N=147; 36.3%; 95% Cl 31.3-40.7) decisional roles; perceived role was typically passive (N=319; 78.8%; 95% Cl 74.8-82.8). Trust in health professionals, perceived lack of knowledge and severity of condition were the most frequently cited determinants of role preference. Patients' decisional role preferences were often at variance with their perceived roles. Taking a highly active role in treatment decision-making was undesirable to most patients. Trust in healthcare professionals was an important contributor to desire to defer or retain control over treatment decisions.