WASHINGTON — Many end-stage renal disease (ESRD) patients would like to receive more comprehensive information about the various treatment alternatives available, according to an article published online Feb. 17 in the Clinical Journal of the American Society of Nephrology (CJASN).
"Dialysis patients should be provided with enough information to choose optimal therapies,” said the article’s lead author, Stephen Fadem, MD (Baylor College of Medicine, Houston, TX). "Our survey shows that dialysis patients do not always receive uniform, thorough information about all possible treatment methods, and as a result, are only moderately satisfied with their pretreatment education."
Nearly 1,000 ESRD patients and their caregivers responded to the survey, conducted by the American Association of Kidney Patients (AAKP), asking for their perspectives on dialysis education and therapy. More than 30 percent of the patients felt that the different options for treatment—in-center hemodialysis, peritoneal dialysis, home hemodialysis, and kidney transplantation—were not "equally or fairly presented to them."
Although the patients were moderately to highly satisfied with their current treatment, there were significant differences between treatment modalities. "Once on therapy, patient satisfaction was highest among transplant patients and home dialysis patients, and lowest among those receiving in-center dialysis," said article co-author Greg Abbott, MBA (Baxter Healthcare Corporation).
Nearly 70 percent of patients indicated they were not provided specific education and training about home hemodialysis. Patients said their physician was the person with the most influence over their choice of therapy. Their main priority for education was information on new treatments and improved medications.
The authors said the survey results highlight the need for improved education for ESRD patients, including more direct involvement by doctors and nurses. "Most patients consider physicians the most valued resource for information, and they indicated the need to ask more questions about therapy options during pretreatment education," said Fadem. "Such questions are best answered by clinicians—physicians or appropriately trained nurses."
The researchers added that lack of information may be an important reason for the low rate of home dialysis among U.S. ESRD patients: less than 10 percent, compared to 22 percent in Canada and 70 percent in Mexico. Fadem added, "Initiation of education earlier in the course of the disease, and greater focus on the benefits of transplantation and home therapies, may increase overall patient satisfaction.”
The survey was done using the Internet, which may lead to bias since not all patients currently on dialysis have access to the Web. "However, the results and conclusions are consistent with those in the literature, which supports their validity and usefulness to the overall population," said Abbott.
