Last March, chief medical officers of 14 major dialysis providers convened a meeting in Chicago. In attendance were the officers themselves, operations personnel and the president of the American Nephrology Nurses Association. We invited NN&I to cover the two-day gathering.
The spirit of the meeting was to share programs and processes that various providers are using to enhance patient outcomes. A condition of attending was a willingness to share information, even protocols, across all providers. There was, indeed, a widespread sharing of those programs that really make a difference in patients’ lives. Everyone agreed to move forward with this open-minded approach; likely, there will be a similar meeting next year to assess progress and advance other programs.
Since last August, NN&I has been publishing a series of reports prepared by the CMOs attending the conference. During the meeting, specific topics were assigned and groups were organized to address subjects such as nutrition, sodium and volume, initiation of dialysis, vascular access, and CKD education. These reports summarize the views of each group on how to improve patient outcomes.
This report, prepared by Doug Johnson, MD, focuses on how we can better prepare individuals with late-stage chronic kidney disease for renal replacement therapy.
Significance: Most patients begin treatment for kidney failure without optimal preparation. As a result, in 2011, 81% of patients started dialysis with a hemodialysis catheter, and only 7% of patients started dialysis at home.1 Patient survival and quality of life are improved by pre-emptive transplantation as compared to dialysis treatment, and peritoneal dialysis at home is associated with greater satisfaction with care and lower cost when compared to in-center hemodialysis treatment, while affording life expectancy which is at least as long as in-center hemodialysis. Hemodialysis by arteriovenous fistula or graft is associated with fewer infections, hospitalizations, and procedures, and with longer survival and lower cost than treatment by hemodialysis by catheter. Finally, among very elderly patients, particularly in the setting of multiple coexisting diseases, dialysis treatment may offer only marginal life prolongation, with considerable discomfort and inconvenience to patients, and either maximal medical management or palliative care may be preferable alternatives for some patients.
Current Status: Few patients currently receive formal CKD education. Although CMS has added Kidney Disease Patient Education System services as a benefit for Medicare beneficiaries with Stage 4 CKD, less than 2% of these patients currently benefit from this service (2013 U.S. Renal Data System Annual Data Report). Both published and unpublished results show that CKD patients who receive education about their kidney disease and choices for care are more likely to choose to perform home dialysis themselves, rather than receiving in-center dialysis treatment. These patients also have a higher chance of beginning dialysis using an arteriovenous fistula or graft rather than a hemodialysis catheter.
At Seattle, Wash.-based dialysis provider Northwest Kidney Centers, 38% of patients who began dialysis in 2012 received CKD education. Of this group, 21% received their first dialysis treatment at home by peritoneal dialysis, and among those who started in center, 88% started with a permanent vascular access in place. Only 35% started dialysis using a catheter. Among patients who did not receive CKD education, 8% started dialysis at home, and of those starting in center, 53% started with a permanent access in place, and 72% started using a catheter.
Dialysis Clinic, Inc. has seen similar benefits after offering the CKD Education program in Spartanburg, S.C., where 42% of new starts on dialysis in 2012 received CKD education. Among these patients, 24% stated dialysis at home. Of those who elected to have dialysis in center, 77% started with a fistula in place, and 54% used a fistula for their first treatment.
In contrast, none of the patients starting dialysis and not receiving the pre-dialysis education elected to start dialysis at home. Only 7% started with a fistula in place, and only 2% used a fistula for their first treatment.
Although a practice guideline recommends review of options for non-dialytic care with all elderly CKD patients, information about the extent to which nephrologists follow this guideline is limited. According to prior evaluations of other CKD education programs, patients who receive CKD education begin dialysis a median of 2.8 months later 2 and live a median 2.25 years longer.3
Barriers: Several factors contribute to suboptimal CKD education. Many patients with CKD do not see a nephrologist before they start dialysis, and may not know that they have kidney disease until they must start dialysis. The 2013 USRDS ADR showed that in 2011, 42% of new patients had not seen a nephrologist before they started dialysis; more than 94% of these began treatment using a hemodialysis catheter. However, even among patients who have seen a nephrologist for more than a year, 63% began with a hemodialysis catheter. Amongst other factors, a lack of a readily available CKD education program may contribute to this observation.
Recommendations: Patients with CKD Stages 4 and 5 should receive intensive education before they start dialysis. This education could be sponsored by a nephrology practice, by a dialysis provider, or by another organization and should encourage patients to take an active role in managing their kidney disease. The educators should be physicians, nurses, nurse practitioners or physician assistants who understand the principles of patient education, working closely with patients and their families. The educators should be in close communication with nephrologists in order to assure that the physician’s and the educator’s message to individual patients is consistent.
If possible, education should begin early enough (stage 3 CKD) so that changes in behavior and adherence may slow CKD progression. For those whose kidney function does decline, CKD education should be provided before the patient’s GFR drops below 20 ml/min/1.73 m2 so that the patient can choose the therapy, appropriate access, and other preparatory measures that are best for the patient.
Research: No large randomized clinical trials have tested the effectiveness of CKD education. Pragmatic clinical trials, in collaboration with the federal funding agencies and dialysis organizations, are highly recommended for testing the efficacy of large scale CKD education. Research efforts should also explore methods for effective communication of prognostic information and to foster active patient decision making in CKD. Until such studies are completed, it is appropriate to provide CKD education in the hope of increasing patient engagement in care, potentially slow the progression of CKD, and make it more likely that the patient undergoes pre-emptive transplantation, starts dialysis therapy at home or, if in center, with a fistula.
1. 2013 United States Renal Data System Annual Data Report (USRDS ADR).
2. Devins GM et al. Predialysis psychoeducational Intervention and coping styles influence time to dialysis in chronic kidney disease. American Journal of Kidney Disease. 2003 Oct; 42(4): 693-703.
3. Devins GM, et al. Predialysis psychoeducational intervention extends survival in CKD: A 20-year follow-up. American Journal of Kidney Disease. 2005 Dec; 46(6):1088-98