A first-of-its-kind patient satisfaction study suggests that many patients tethered to a life-saving artificial kidney machine that cleanses the blood stream of wastes might have preferred a second option -- home-based peritoneal dialysis that uses the lining of the patient's belly as a natural filter -- if only they had been given a truly informed choice.
The Johns Hopkins researchers found that after about several weeks of treatment, kidney disease patients who were given the option of peritoneal dialysis were 1.5 times more likely than artificial kidney hemodialysis patients to rate their overall care as excellent. Their study will be published in the Feb. 11 issue of Journal of the American Medical Association. Neither treatment is clearly superior to the other with regard to mortality and overall complications.
The kidney normally cleans wastes from the blood stream. If the organ stops working, to survive, patients must undergo "kidney replacement treatment" – with either a scarce kidney transplant or more commonly a lifetime of dialysis. Peritoneal dialysis involves surgically and permanently placing a soft plastic tube or catheter into the lining of the belly. A sterile cleansing fluid is flushed through this catheter and allowed to dwell in the belly until wastes pass across the lining into the fluid. The fluid now filled with wastes is then removed from the belly via the same tube.
Generally, peritoneal dialysis can be conducted in several short daily sessions at home or work using portable equipment, whereas hemodialysis requires multiple visits to a dialysis center each week for hours at a time.
"Peritoneal dialysis may be a better option for more patients than are receiving it in the U.S.," says Haya Rubin, M.D., Ph.D., Professor of Medicine and Director, Quality of Care Research at Johns Hopkins. "Our study suggests that the vast majority of patients who are undergoing hemodialysis could be making a decision on dialysis treatment on the basis of very inadequate information. Peritoneal dialysis patients are far more happy with their care than hemodialysis patients."
She adds that pressure to fill large, growing numbers of hemodialysis centers nationwide with patients who use the more expensive personnel and equipment may be part of the reason that more patients are undergoing hemodialysis.
The researchers undertook the study because they were puzzled that the rate of using peritoneal dialysis continued to fall in the United States, while anecdotal evidence mounted that peritoneal patients were quite satisfied with the treatment, and it was increasingly favored in other countries, including European nations and the United Kingdom.
Currently, only 10 percent of the 100,000-plus patients starting dialysis each year in the United States use peritoneal dialysis.
For their study, the researchers surveyed 656 patients at 37 dialysis centers in 14 states, asking them about their care seven weeks after they began dialysis. While patients who use peritoneal dialysis must visit a dialysis center for about one to two weeks to be trained, eventually they can perform the 30 minute procedure four times a day outside of the center, offering them much more independence. They typically return to the dialysis center monthly for check-ups. Hemodialysis patients, by contrast, must spend 3-4 hours, three times a week, attached to a blood cleaning machine at a dialysis center.
The survey results showed that 85 percent of peritoneal dialysis patients rated their care as "excellent" compared to 56 percent of hemodialysis patients. The ratings included variables such as care by and access to the dialysis center staff, quality of treatment, and pain control, but the largest differences between the two groups of patients were "information given to help choose modality," and "the amount of dialysis information from staff."
Even when the results were adjusted to account for age, race, gender, education and other demographic differences between the two groups -- peritoneal dialysis patients tended to be better educated, married and working -- peritoneal patients still rated their quality of care much higher than did hemodialysis patients.
"This really speaks to the issue of whether patients are getting all the information they need upfront, in a thorough, comprehensive way, to choose the right treatment for them," says principal investigator Neil R. Powe, M.D., M.P.H., M.B.A., Director, of the Welch Center for Prevention, Epidemiology and Clinical Research and Professor of Medicine, Epidemiology and Health Policy and Management at the Johns Hopkins School of Medicine and the Bloomberg School of Public Health.
"Economic issues or lack of information on peritoneal dialysis' benefits may promote referrals to hemodialysis," says Rubin, also a faculty member of the Johns Hopkins School of Medicine and the Bloomberg School of Public Health. "Dialysis centers invest heavily in both equipment and personnel and to remain financially solvent must make sure both are used to receive reimbursement by Medicare, the nation's largest payer of dialysis services."
"Some patients may like the social aspects of spending time in a hemodialysis center, and others may just not want to bother with peritoneal dialysis," says Powe. "But I think some hemodialysis patients would switch if they knew more about peritoneal dialysis, because they would appreciate being more satisfied with their care."
The study was supported by grants from the Agency for Healthcare Research and Quality and the National Institute of Diabetes and Digestive and Kidney Diseases. Researchers who collaborated with Rubin and Powe include, from Hopkins, Nancy Fink, and Laura Plantinga; John Sadler, M.D., from the Independent Dialysis Foundation in Baltimore; and Alan Kliger, M.D., from Yale University and the Department of Medicine at Hospital of St. Raphael, in New Haven, Connecticut.
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