Medical decision-making and information needs in end-stage renal disease patients

Health information and decision-making are increasingly important to patients with diverse illnesses. The aim of this study was to examine health information needs and decision-making in individuals with end-stage renal disease (ESRD) and to examine the influence of age and gender. A self-report survey was administered to 197 consecutive ESRD patients receiving renal replacement therapy. Their mean age was 52.8 years; 58.2% were male, 64.3% were on hemodialysis, and 35.7% on peritoneal dialysis. Actual participation levels in decision-making were not necessarily in agreement with the preferred degree of participation. Eighty percent of patients wanted the health care team (HCT) to make their treatment decisions for them, but only 40% of those who preferred autonomous and 30% of those who preferred shared decision making with their HCT reported that this was their actual experience. Consequently, many more patients perceived that their decision-making was made by their HCT than preferred this. No significant gender differences were observed; however, older participants preferred and experienced their HCT make their treatment decisions (P<.05). All patients wanted high levels of information with some differences by gender and age. HCT should strive to ascertain and meet the information needs and treatment decision-making roles preferred by individual patients.