Realizing the Promise of Equity in the Organ Transplantation System (2022) / Chapter Skim
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4 Confronting and Eliminating Inequities in the Organ Transplantation System
4 Confronting and Eliminating Inequities in the Organ Transplantation System
Pages 85-116
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From page 85... ...
Health disparities adversely affect groups of people who have systematically experienced greater obstacles to health based on their racial or ethnic group; religion; socioeconomic status; gender; age; mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination or exclusion" (HHS, 2021a)
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This chapter details what is currently known about inequities in access to organ transplants in the United States as well as related aspects including referral to specialists, access to the transplant waiting list, and posttransplant outcomes, and it proposes a recommendation for addressing root causes of inequities in the transplantation system. Other issues examined in this chapter include structural challenges and data gaps that contribute to health inequities in the organ transplantation system in the United States.
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. However, stakeholders within the organ transplantation system can take many actions to improve equity, including increasing access to the waiting list.
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. As highlighted in Table 4-1, much of the existing data on disparities in organ transplantation focus on race and ethnicity in kidney transplantation, mainly between black and white populations.
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Preemptive placement on Kidney Adult Black, Hispanic • White candidates are more often preemptively listed for kidney transplant waiting list transplant vs. black and Hispanic candidates (39.4% vs.
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Key Outcomes 90 and Transplant Pathway Pediatric Affected Access to the waiting list Kidney Adult Women • Men have greater access to the kidney transplant waiting list compared to women and also have increased access to a deceased donor kidney transplant (Ahearn et al., 2021)
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b Although the Statement of Task for this consensus study is focused on deceased donor organ transplants, the health disparities related to living donation are critical and have an effect on the overall transplantation system and therefore are highlighted above. 91 c The Centers for Disease Control and Prevention Social Vulnerability Index (SVI)
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92 REALIZING THE PROMISE OF EQUITY IN THE ORGAN TRANSPLANTATION SYSTEM Registration for Referral to Transplant Center Organ Donation
Organ Donation PCP/Specialist Assessment Authorization of Suitability for Transplant
Time from Waiting Completing List to Transplant Pretransplant
Evaluation
Access to Waiting list Preemptive Placement on
Kidney Transplant Waiting list
Living Organ Donation Deceased Donor Organ Transplant
Access to Advanced Therapies for Organ Posttransplant Disease and Waiting List Outcomes Outcomes
FIGURE 4-1 Known disparities in the organ transplantation pathway. NOTE: PCP = primary care physician.
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From page 93... ...
requirements to collect disaggregated data by race and ethnicity, gender/sex, age, and language in organ donation and transplantation research precludes efforts to fully understand inequities in organ transplantation. Data gaps further compound challenges in provider decision making and preclude institutional priority setting for redressing inequities.
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From page 94... ...
These protections specify that qualified individuals with disabilities cannot be excluded from programs receiving federal funding and that those programs should provide reasonable accommodations for individuals with disabilities.5 However, many individuals with ID still face challenges in referral for evaluation and access to a transplant waiting list. In recent years, a number of 4 Cold ischemic time refers to the time between when an organ is cross-clamped after being removed from the donor and when the organ is warmed with the recipient's blood.
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Disparities in Provider Referrals and Evaluation Disparities in provider referral and evaluation contribute to unequal access to a waiting list for individuals with ID, and downstream, to an organ transplant. Dobbels (2014)
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While approximately 3 percent of deceased donor organs come from undocumented immigrants, disproportionately fewer undocumented immigrants (0.4 percent) receive organ transplants (Glazier et al., 2014; Lee and Terrault, 2020)
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.9 Local nonprofit organizations may offer financial and placement assistance for undocumented immigrants requiring dialysis. However, these support structures are sporadic and do not cover the costs associated with kidney transplantation (cost will be discussed further in Chapter 6)
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Recently, the OPTN Minority Affairs Committee proposed efforts to collect additional socioeconomic information related to disparities in access to kidney transplantation, though this effort is still in progress.14 Gaps in Data Present a Systems Issue As previously noted, it is difficult to properly assess equitable referral and evaluation for organ transplantation because of a lack of national surveillance data.
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Together, this total score is meant to convey how likely it is that a candidate on a transplant waiting list will receive a deceased donor heart, lung, kidney, or liver transplant. A major challenge to measuring equity in transplant using data collected by the OPTN -- including data presented in the equity dashboard -- is the lack of data regarding the referral process and steps prior to initiating evaluation.
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.17 One study found that nondiabetic kidney disease and Charlson comorbidity index were significantly associated with late referral;18 the authors recommended that physicians 17 Serum creatinine is a laboratory measure used to assess kidney functioning. Higher levels of creatinine (a waste product)
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However, disparities arise in preemptive referral to kidney transplantation with black patients having a 37 percent lower chance of being preemptively referred for transplant evaluation than white patients (odds ratio = 0.63 [95% confidence interval: 0.55, 0.71]
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incentivizing transplant centers to add potential candidates to the waiting list quickly; (3) implementing kidney allocation system changes (e.g., standardizing the GFR estimation to foster fairness through the use of a single standard to all patients)
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Disproportionately fewer racial and ethnic minority patients receive organ transplants than are represented on the transplant waiting list. These inequities undermine the trust necessary for the organ transplantation system to function optimally.
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The Future Directions for the National Healthcare Quality and Disparities Reports built on the reports Envisioning the National Health Care Quality Report and Crossing the Quality Chasm to include access and efficiency as quality care components in its conceptual framework for categorizing health care quality and disparities (IOM, 2010)
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EVIDENCE-BASED INTERVENTIONS FOR IMPROVING HEALTH EQUITY IN THE ORGAN TRANSPLANTATION SYSTEM A number of evidence-based interventions have been developed to reduce disparities and increase access to kidney transplantation, improve organ donation rates, and increase access to living donor kidney transplantation. These interventions include the use of patient navigators as well as a range of culturally targeted educational interventions delivered online, through mass media, or in person at transplant centers, patients' homes, or community-based venues.
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From page 106... ...
Furthermore, patients scored higher on a transplant knowledge test after using the application -- regardless of their health literacy level -- and expressed more interest in living and deceased donor kidney transplantation. A randomized controlled trial was conducted to test the effectiveness of a bilingual website about living kidney donation and transplantation that was culturally targeted for Hispanics and Latinos, who are disproportionately affected by kidney disease and receive disproportionately fewer LDKTs than whites (Gordon et al., 2016a,b)
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From page 107... ...
However, despite the importance of high-quality, positive interactions between OPO staff and the family members of a potential donor, there are no national standards for how to train OPO staff on communication skills in compassion and cultural sensitivity. One study across eight geographically distinct areas of the United States found meaningful variations in the way OPO staff communicated with family decision makers about organ donation, suggesting that "OPO staff were missing opportunities to increase the supply of available deceased donor organs...and equalize some of the regional variations in donation, conversion, and transplantation rates" (Traino et al., 2017, p.
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From page 108... ...
• HHS should conduct ongoing culturally targeted public education campaigns to convey the need for organ donation to save lives, to eliminate misconceptions about organ donation and transplantation, and to increase the trustworthiness of the transplantation system. Elevating Voices of Those Facing Disparities • The OPTN should be required to ensure that all populations facing disparities, including persons with disabilities, are represented in the transplant policy devel opment process.
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2021. Sex disparity in deceased donor kidney transplant access by cause of kidney disease.
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2021. Ef fectiveness of a culturally competent care intervention in reducing disparities in Hispanic live donor kidney transplantation: A hybrid trial.
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2013. Preemptive deceased donor kidney transplantation: Considerations of equity and utility. Clinical Journal of the American Society of Nephrology 8(4)
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2014. Living donor kidney transplantation: Preferences and concerns amongst patients waiting for trans plantation in New Zealand. Journal of Health Services Research & Policy 19(3)
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2021b. Racial disparities in preemptive waitlisting and deceased donor kidney transplantation: Ethics and solutions.
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2010. Addressing racial and eth nic disparities in live donor kidney transplantation: Priorities for research and intervention. Seminars in Nephrology 30(1)
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2021. Pediatric kidney transplant in undocumented immigrants: An American perspective.
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