Validity of a Standard Information Protocol Provided to End-Stage Renal Disease Patients and Its Effect on Treatment Selection

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Abstract
Objective: To evaluate the validity of a standard information package, comprising written and audiovisual aids, for end-stage renal disease (ESRD) patients in a pre-dialysis program. Study Design: A multicenter study comprising patients entering a predialysis program. Three questionnaires were developed to gather data in this study: (1) a pre-information package questionnaire that evaluates the patient's initial knowledge of ESRD and the treatment options available (pre-informed patients); (2) a post-information package questionnaire that evaluates the patient's knowledge of ESRD and treatment options after being informed according to the protocol (post-informed patients); (3) a “start of the treatment” questionnaire that deals with the patient's choice of treatment at the time of starting dialysis, as well as the reasons leading to that choice. In all three questionnaires the patient's age, gender, level of creatinine clearance (Ccr), and hematocrit were recorded. Inclusion Criteria: Any patient who was on a predialysis program in the participating centers. Results: Three hundred and four patients were evaluated across 14 participating centers. Initial knowledge was assessed in 216 pre-informed patients (questionnaire 1). Patients were then guided through the information package. One hundred and fifty-eight patients answered the post-information package (questionnaire 2). During the course of the study, 174 patients (of the initial 304) started renal replacement therapy. Of these, 49.4% (86 patients) had received predialysis information according to our study protocol. All the patients who received the information throughout the trial improved their knowledge of ESRD and treatment options; this improvement was statistically significant. Conclusions: The treatment options least well known at the start of the study were the peritoneal dialysis techniques. After receiving the information package, patients had an equal knowledge of all the different treatments, although hemodialysis was still the most familiar. This improvement in knowledge enabled patients who started a dialysis treatment to choose a therapy according to their own preferences. Their selections were as follows: 44% of the patients chose hemodialysis, 40% chose continuous ambulatory peritoneal dialysis, and 16% chose automated peritoneal dialysis. The standard information package, used as a patient education program, effectively resulted in patients having a significantly improved level of knowledge and understanding of ESRD and the different treatment options available.