The Center for Medicare and Medicaid Services (CMS) uses Technical Expert Panels (TEPs) to develop quality measures. The TEPs are a multistakeholder group composed of physicians, policy experts, patients, and other health care providers. The CMS has used TEPs to define quality measures for dialysis facilities.
In April 2015, the ESKD Access to Kidney Transplantation TEP was formed and convened at a meeting in Baltimore, Maryland (1). The TEP was formed with the goal of applying available evidence and the group’s experience in providing recommendations to the University of Michigan Kidney Epidemiology Cost Center on quality measures, assessment of current quality measures, and identification of gaps in access to kidney transplantation. Members of this TEP included physicians, policy experts, patients, and other health care providers.
Although the TEP meeting did not result in measure specifications, the discussion centered on five areas.
Patient education on kidney transplantation
Referral for kidney transplant evaluation
Waitlisting for kidney transplantation
Transplantation evaluation tracking measure
Transplantation rates or standardized transplantation ratios
Eventually, two measure recommendations were made to the National Quality Forum (NQF).
Percent of prevalent patients waitlisted (PPPW) tracks the percentage of patients at each dialysis facility who were on the kidney or kidney-pancreas transplant waitlist. Results are averaged across patients prevalent on the last day of each month during the reporting year.
Standardized waitlist ratio is a measure that tracks the number of incident patients at the dialysis facility under the age of 75 years old listed on the kidney or kidney-pancreas transplant waitlist or who received living donor transplants within the first year of initiating dialysis.
To date, the two recommendations have not been submitted to the NQF.
In this issue of the Clinical Journal of American Society of Nephrology, Patzer and coworkers (2) present a risk-adjusted quality metric, standardized transplantation referral ratio (STReR), to evaluate dialysis facility performance. The introduction of this measure is partially on the basis of the wide variation in transplant referral in Georgia and should provide dialysis facility accountability. Performance is measured on a regional basis, the state of Georgia, with similar patient case mix. Performance comparisons were limited to Georgia, because national transplant referrals are not collected.
The STReR measure compares the observed number of kidney transplant referrals among patients with incident ESKD within a facility (numerator) with an expected number of patients with ESKD in Georgia adjusted for the patient case mix in that facility (denominator). The outcome measure is the risk-adjusted dialysis facility count of adult patients on dialysis referred for a kidney transplant. Facilities with fewer than five patients with incident ESKD were excluded for referral measurement.
The study measured the performance of 249 Georgia dialysis facilities. The majority of the dialysis facilities (77%) had expected transplant referrals. The study was rounded out, with 11% of the facilities having greater than expected referrals, whereas 12% had less than expected referrals. Because information on referral for kidney transplantation is not collected on a national basis, the measured performance is limited to Georgia. Patzer and coworkers (2) are conducting similar studies in other states.
The most striking aspect of this study was learning that kidney transplant referrals are not collected nationally. Because a kidney transplant has been established as a superior treatment versus dialysis, I was stunned. In addition, I learned that a CMS expert panel recommended kidney transplant referrals as a quality metric in 2005 (3). On the basis of that recommendation, there have not been any requirements to track referral data. This lack of national data collection was identified by the April 2015 TEP as a reason to not recommend referral for a kidney transplantation as quality metric.
The absence of national referral data calls into question the overall aim for the CMS ESKD program. On the basis of 2015 Medicare data, there is a significant economic difference between per person per year (PPPY) ESKD dialysis costs and kidney transplantation. In 2015, hemodialysis was $88,750 PPPY; peritoneal dialysis was $75,140, and kidney transplantation was $34,084 PPPY (4). Solely on the basis of economic considerations, it would seem that the CMS would have interest in understanding kidney transplant referrals.
Like other members in the transplant community, I am requesting that the CMS mandate that all dialysis facilities collect and record kidney transplant referrals. I am making this request for several reasons. First, I think that this action would clarify the intentions of the CMS ESKD system to all stakeholders. Second, I hope that it would stimulate research into understanding the effectiveness of patient education on the different modalities for ESKD. Moreover, I would expect that research would be applied to understanding the risk-benefit discussions on modalities for kidney failure. I believe that the absence of these patient conversations has contributed to the discard of 1000 kidneys that could be viable for kidney transplants (5). Third, it would place greater accountability on dialysis facilities. Ultimately, the value of this data collection may be system-wide assessment and evaluation of patient-provider communication in the CMS ESKD system.
Patients with ESKD would be better served with a quality measure other than PPPW. For starters, the term “waitlisted” has such a passive connotation. In my mind, it continues to reinforce the low expectations that patients with ESKD have accepted. Considering that only 13% of patients with ESKD are referred to the waitlist, this measure does not seem to be serving the best interests of patients. The patient community needs to activate their voice and ask for a better quality measure.
The STReR may be a good quality metric to replace the recommended PPPW. After the ongoing studies by Patzer and coworkers (2) are completed, there may be additional information on the validity and reliability of the STReR quality measure. It will be very interesting to learn about referral rates other than those in Georgia. I anticipate that the additional state data will further the case of STReR as a quality measure and my support of it as well.
While we wait for the studies to be completed and published, I am recommending immediate action. I am requesting that the CMS mandate that all dialysis facilities collect and record their kidney transplant referrals. This requirement is long overdue and will serve to clarify the priorities and intentions of the CMS ESKD system. Additionally, it will serve as the foundation for future research to assess and evaluate patient-provider patient communications across the continuum of kidney disease.
Disclosures
K.J.F. serves as a consultant to the following companies: TapCloud LLC, Hansa Medical, Protalix Biotherapeutics, Omeros, Otsuka, patientMpower, and Horizon Pharma.
Acknowledgments
K.J.F. is the President of The Voice of the Patient, Inc. and Vice-Chair of the Kidney Health Initiative and Patient Family Partnership Council.
Footnotes
Published online ahead of print. Publication date available at www.cjasn.org.
See related article, “Standardized Transplantation Referral Ratio to Assess Performance of Transplant Referral among Dialysis Facilities,” on pages 282–289.
References
- 1.Pastan S, Waterman A: ESRD Access to Kidney Transplantation Technical Summary Report, April 20 + 21, 2015. Available at https://dialysisdata.org/sites/default/files/content/ESRD_Measures/Access_To_Kidney_Transplantation_TEP_Summary_Report.pdf. Accessed November 30, 2017
- 2.Paul S, Plantinga LC, Pastan SO, Gander JC, Mohan S, Patzer RE: Standardized transplantation referral ratio to assess clinical performance of transplant referral among dialysis facilities. Clin J Am Soc Nephrol 13: 282–289, 2018 [DOI] [PMC free article] [PubMed]
- 3.Sehgal A, León J, Stark S: ESRD Special Study: Developing Dialysis Facility Specific Kidney Transplant Referral Clinical Measures, 2005. Available at http://www.therenalnetwork.org/qi/resources/TransTEPfinalrpt805.pdf. Accessed November 30, 2017
- 4.United States Renal Data System : Healthcare expenditures for persons with ESRD, 2017. Available at https://www.usrds.org/2017/view/v2_09.aspx. Accessed November 30, 2017 [Google Scholar]
- 5.Pastan S, Cooper M: Consensus conference to decrease kidney discards. Presented at the National Kidney Foundation Conference, Baltimore, MD, May 18 and 19, 2017