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American Journal of Kidney Diseases

Advancing Transplant Equity by Closing the Gaps in Policy, Practice, and Research

  • Tanjala S. Purnell
    Correspondence
    Address for Correspondence: Tanjala S. Purnell, PhD, MPH, Departments of Epidemiology, Surgery, Health Behavior, and Health Policy, Johns Hopkins Schools of Public Health and Medicine, 2024 E Monument St, Baltimore, MD 21205.
    Affiliations
    Departments of Epidemiology, Health Policy and Management, and Health Behavior and Society, Johns Hopkins Bloomberg School of Public Health; and Department of Surgery/Transplantation, Johns Hopkins School Medicine, Baltimore, Maryland
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Published:October 08, 2022DOI:https://doi.org/10.1053/j.ajkd.2022.08.003
      Patients trust us, and that comes with the responsibility to do everything we can to ensure the systems they depend on give them a chance to live their best lives.—US Rep. Lauren A. Underwood, MSN/MPH, RN
      University of Michigan School of Nursing
      We dare to shape the future.
      Related Article, p. 707
      Despite longstanding recognition of the need to improve transplant access and equity, systemic barriers continue to drive suboptimal access to transplantation.
      • Johansen K.L.
      • Chertow G.M.
      • Foley R.N.
      • et al.
      US Renal Data System 2020 Annual Data Report: epidemiology of kidney disease in the United States.
      ,
      • Purnell T.S.
      • Simpson D.C.
      • Callender C.O.
      • Boulware L.E.
      Dismantling structural racism as a root cause of racial disparities in COVID-19 and transplantation.
      To increase efficiency and redress inequities in organ allocation through policy changes, the Organ Procurement and Transplantation Network (OPTN) Kidney Allocation System (KAS) dramatically changed deceased-donor kidney allocation, effective December 4, 2014.
      US Department of Health and Human Services
      Kidney allocation system.
      This new KAS policy change was designed in response to national calls to improve efficiency and equity in organ allocation. A key component of the policy change is that waiting time for patients now includes time elapsed after initiating treatment for kidney failure, even before being officially registered on the waitlist.
      US Department of Health and Human Services
      Kidney allocation system.
      Subsequent to the implementation of KAS, studies have been conducted to assess whether these changes have helped to improve transplant access and equity. These early studies reported improvements in overall access to deceased-donor kidney transplantation for younger, highly sensitized, and racial and ethnic minority patients who were registered on the waitlist.
      • Massie A.B.
      • Luo X.
      • Lonze B.E.
      • et al.
      Early changes in kidney distribution under the new allocation system.
      ,
      • Melanson T.A.
      • Hockenberry J.M.
      • Plantinga L.
      • et al.
      New kidney allocation system associated with increased rates of transplants among black and Hispanic patients.
      In this issue of AJKD, Patzer et al evaluated the impact of the new KAS on referral and evaluation for transplantation among a population with incident and prevalent kidney failure.
      • Patzer R.E.
      • Di M.
      • Zhang R.
      • et al.
      Referral and evaluation for kidney transplantation following implementation of the 2014 National Kidney Allocation System.
      The authors sought to test whether the national decrease in waitlisting may have resulted in part from a decrease in referrals for transplant or is a result of practice changes by transplant centers during the early steps in the transplant evaluation process. The authors leveraged a novel dataset, the Southeastern Kidney Transplant Coalition Early Transplant Access Registry, which encompasses patient data in Georgia, North Carolina, and South Carolina and data from all 9 adult kidney transplant centers in this tristate area. The authors linked data from the registry with patient data from the US Renal Data System and 5-digit ZIP code data from the 2014 American Community Survey. They hypothesized that the implementation of KAS may have resulted in reduced urgency to waitlist incident dialysis patients compared with prevalent cases (ie, patients who have been receiving dialysis longer) as a result of how KAS reassigned allocation time to include time since kidney failure.
      Within the study, Patzer et al analyzed data from 37,676 new patients who initiated maintenance dialysis in 2012-2016 in dialysis facilities in the tristate area. The authors found that 43.4% of patients were referred, 52.4% of those referred started the evaluation, and 35.2% of evaluated patients were waitlisted during the study period. Among incident cases, the post-KAS era was associated with increased referrals and evaluation starts, but decreased overall waitlisting and lower rates of active waitlisting among those evaluated, compared with the pre-KAS era. Among prevalent cases, the post-KAS era was associated with increases in overall and active waitlisting among those evaluated, but there was no significant association with referral or evaluation starts, compared with the pre-KAS era. The authors found minimal sociodemographic and clinical differences among patients before versus after KAS. Notably, post-KAS patients were slightly more likely to be non-Hispanic White. Black patients accounted for 62.4% of incident patients referred before KAS versus 61.9% referred after KAS and 56.8% of waitlisted incident patients before KAS versus 62.7% after KAS.
      Overall, results from this study suggest that lower rates of waitlisting among the incident patient population after KAS are not due to lower rates of referral or evaluation of these patients, but result from less waitlisting among evaluated patients at transplant centers. In addition, the authors found that, among the prevalent population, there were higher rates of waitlisting among those who were referred and began the evaluation; however, KAS had no significant effect on referral and evaluation start. These results complement other recent reports of how performance oversight influences transplant center behavior and how center behavior influences transplant access.
      • Schold J.D.
      • Buccini L.D.
      • Poggio E.D.
      • Flechner S.M.
      • Goldfarb D.A.
      Association of candidate removals from the kidney transplant waiting list and center performance oversight.
      What might explain lower rates of waitlisting after KAS among incident patients despite increased rates of referral and evaluation? It is difficult to know for certain because of a lack of national data examining each step of the transplant referral and evaluation processes. One hypothesis is that dialysis facilities may be referring more patients with a higher burden of disease, which may ultimately influence lower rates of waitlisting among incident patients evaluated since the implementation of KAS. This theory is supported by the study findings of higher rates of post-KAS referrals and evaluation starts, as well as increases in the fraction of referred patients aged at least 70 years, with body mass index ≥35 kg/m2, and with more comorbidities. This important study by Patzer et al emphasizes the importance of understanding the ways in which changes in policy may influence health system– and provider-level behavior changes among dialysis facilities and transplant centers. As pointed out by Patzer et al, it is also possible that longer expected waiting times overall and wait time credit from dialysis start date following KAS implementation has affected center listing practice by reducing the urgency to list incident dialysis patients for time even before they complete their evaluation requirements.
      Importantly, policy changes alone may not be sufficient to advance transplant equity. In addition, universal policies such as the new KAS may be more effective when combined with other targeted approaches that help to address current gaps in transplant policy, practice, and research.
      • Mohottige D.
      • McElroy L.M.
      • Boulware L.E.
      A Cascade of structural barriers contributing to racial kidney transplant inequities.
      • Purnell T.S.
      • Calhoun E.A.
      • Golden S.H.
      • et al.
      Achieving health equity: closing the gaps in health care disparities, interventions, and research.
      • Eneanya N.D.
      • Boulware L.E.
      • Tsai J.
      • et al.
      Health inequities and the inappropriate use of race in nephrology.
      For instance, patients may face numerous barriers during their transplant journey, and these barriers act at multiple levels related to potential recipients and donors, health care providers, health system structures, and communities. If effective solutions to increase transplant equity are to be successfully formulated, adopted, and implemented, it is vital to address the complex, multilevel barriers that influence the presence of inequities.
      As highlighted in Fig 1, strategies are needed to address gaps in transplant practice, research, and policy to successfully overcome barriers at multiple levels of influence, including the individual, interpersonal, health-system, community, and societal levels.
      • Mohottige D.
      • McElroy L.M.
      • Boulware L.E.
      A Cascade of structural barriers contributing to racial kidney transplant inequities.
      • Purnell T.S.
      • Calhoun E.A.
      • Golden S.H.
      • et al.
      Achieving health equity: closing the gaps in health care disparities, interventions, and research.
      • Eneanya N.D.
      • Boulware L.E.
      • Tsai J.
      • et al.
      Health inequities and the inappropriate use of race in nephrology.
      • Delgado C.
      • Baweja M.
      • Crews D.C.
      • et al.
      A unifying approach for GFR estimation: recommendations of the NKF-ASN Task Force on Reassessing the Inclusion of Race in Diagnosing Kidney Disease.
      • Purnell T.S.
      • Bae S.
      • Luo X.
      • et al.
      National trends in the association of race and ethnicity with predialysis nephrology care in the United States from 2005 to 2015.
      • Norris K.C.
      • Beech B.M.
      Social determinants of kidney health: focus on poverty.
      At the individual level, there is a need for targeted interventions designed to reduce transplant disparities through appropriate and respectful engagement of diverse communities and patients with lived experiences. Specifically, it is important to incorporate individual patient engagement in the design and implementation of approaches to overcome barriers to transplant access and outcomes (eg, transportation, financial resources, knowledge). At the interpersonal and health system levels, there are several existing gaps in knowledge regarding the identification of best practices for enhancing nephrology and transplant professionals’ communication skills and cultural competence to reduce the potential impact of implicit and explicit biases experienced by minoritized groups (eg, timely education, transplant referrals, and perceptions about social support).
      • Mohottige D.
      • McElroy L.M.
      • Boulware L.E.
      A Cascade of structural barriers contributing to racial kidney transplant inequities.
      ,
      • Eneanya N.D.
      • Boulware L.E.
      • Tsai J.
      • et al.
      Health inequities and the inappropriate use of race in nephrology.
      ,
      • Purnell T.S.
      • Bae S.
      • Luo X.
      • et al.
      National trends in the association of race and ethnicity with predialysis nephrology care in the United States from 2005 to 2015.
      Provider and center practices that promote shared decision making and that are respectful of cultural differences in family and social-network dynamics are crucial. At the health-system level, organizational efforts are also needed to increase focus on reducing biases in estimating kidney function, as well as prioritizing health equity as an essential element in quality improvement for dialysis and transplant centers.
      • Eneanya N.D.
      • Boulware L.E.
      • Tsai J.
      • et al.
      Health inequities and the inappropriate use of race in nephrology.
      ,
      • Delgado C.
      • Baweja M.
      • Crews D.C.
      • et al.
      A unifying approach for GFR estimation: recommendations of the NKF-ASN Task Force on Reassessing the Inclusion of Race in Diagnosing Kidney Disease.
      At the broader societal and community levels, targeted policies, coupled with meaningful partnerships between health systems and community resources to address social determinants, are also paramount.
      • Norris K.C.
      • Beech B.M.
      Social determinants of kidney health: focus on poverty.
      Figure thumbnail gr1
      Figure 1Recommendations for closing the gaps in transplant policy, practice, and research.
      In summary, despite early post-KAS improvements in overall access to deceased-donor kidney transplantation for some waitlisted patients, additional efforts are needed to address barriers driving lower rates of waitlisting among the post-KAS incident patient population. Strategies are also needed to better understand transplant center and provider behavior changes regarding waitlisting for incident patients. Efforts to couple universal transplant policies with targeted approaches to address multilevel barriers for at-risk groups will add immense value to current efforts to promote equity while also improving overall access to transplantation.

      Article Information

      Support

      Dr Purnell was supported by grant K01HS024600 from the Agency for Healthcare Research and Quality (AHRQ). The funder had no role in the preparation, review, or approval of the manuscript or the decision to submit for publication.

      Financial Disclosure

      The author declares that she has no relevant financial interests.

      Other Disclosures

      Dr Purnell is Chair of the American Society of Transplant Surgeons (ASTS) Diversity, Equity, and Inclusion Committee; Co-Lead of the Education Workgroup for the American Society of Nephrology (ASN) Health Care Justice Committee; a member of the National Kidney Foundation (NKF) Transplant Advisory Committee; and a member of the Governing Board of Directors for the Living Legacy Foundation of Maryland and the National Minority Organ Tissue Transplant Education Program (MOTTEP).

      Disclaimer

      The views herein represent Dr Purnell and do not represent the official position of the ASTS, ASN, NKF, Living Legacy Foundation, MOTTEP, or AHRQ.

      Peer Review

      Received May 16, 2022, in response to an invitation from the journal. Direct editorial input from an Associate Editor and a Deputy Editor. Accepted in revised form August 5, 2022.

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      Linked Article

      • Referral and Evaluation for Kidney Transplantation Following Implementation of the 2014 National Kidney Allocation System
        American Journal of Kidney DiseasesVol. 80Issue 6
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          The national kidney allocation system (KAS) implemented in December 2014 in the United States redefined the start of waiting time from the time of waitlisting to the time of kidney failure. Waitlisting has declined post-KAS, but it is unknown if this is due to transplant center practices or changes in dialysis facility referral and evaluation. The purpose of this study was to assess the impact of the 2014 KAS policy change on referral and evaluation for transplantation among a population of incident and prevalent patients with kidney failure.
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