Role of patient factors, preferences, and distrust in health care and access to liver transplantation and organ donation

Abstract

Despite major improvements in access to liver transplantation (LT), disparities remain. Little is known about how distrust in medical care, patient preferences, and the origins shaping those preferences contribute to differences surrounding access. We performed a single-center, cross-sectional survey of adults with end-stage liver disease and compared responses between LT listed and nonlisted patients as well as by race. Questionnaires were administered to 109 patients (72 nonlisted; 37 listed) to assess demographics, health care system distrust (HCSD), religiosity, and factors influencing LT and organ donation (OD). We found that neither HCSD nor religiosity explained differences in access to LT in our population. Listed patients attained higher education levels and were more likely to be insured privately. This was also the case for white versus black patients. All patients reported wanting LT if recommended. However, nonlisted patients were significantly less likely to have discussed LT with their physician or to be referred to a transplant center. They were also much less likely to understand the process of LT. Fewer blacks were referred (44.4% versus 69.7%; P 5 0.03) or went to the transplant center if referred (44.4% versus 71.1%; P 5 0.02). Fewer black patients felt that minorities had as equal access to LT as whites (29.6% versus 57.3%; P < 0.001). For OD, there were more significant differences in preferences by race than listing status. More whites indicated OD status on their driver's license, and more blacks were likely to become an organ donor if approached by someone of the same cultural or ethnic background (P < 0.01). In conclusion, our analysis demonstrates persistent barriers to LT and OD. With improved patient and provider education and communication, many of these disparities could be successfully overcome.Liver Transplantation 22 895-905 2016 AASLD.

Hepatocellular Carcinoma in Micronesians, a Growing Pacific Islander Population in the U.S.

“…Perhaps it is because 80% of Micronesians in our study had hepatitis B, a screenable disease, that allowed earlier detection and the opportunity for curative therapies and better survival. Other U.S. studies have suggested that minorities are less likely to receive transplant due to differences in education, insurance, and patient perception of involvement in their care [20,21]. However, the Micronesians in our study had similar socioeconomic parameters and were able to overcome barriers to transplant.…”

“…Previous studies on ethnic disparities in HCC cite culturally competent education and effective communication as key factors to improve care for minorities [20]. In Hawaii, we have several health clinics that readily refer patients to our liver center and are equipped with interpreters who speak various Micronesian dialects.…”

Communication and trust: Critically important to eliminate disparities in liver transplantation

“…Wilder et al also show that patients were aware of this disparity. Specifically, fewer than 30% of blacks believed that minorities get equal access to liver transplant compared to over 50% of whites . Other studies also support the finding that blacks are aware of this disparity and are more likely to feel that race, income, and sex influence their care …”

“…Wilder et al also found that blacks were less likely to consider becoming an organ donor than whites. This disparity did not appear to stem from religious or moral beliefs.…”

Specific issues concerning the management of patients on the waiting list and after liver transplantation

“…Failure to refer patients to LT centres, or delaying their referral, and/or excessively selective screening practices at LT centres are possible reasons why potentially eligible LT candidates with ESLD have limited access to waiting lists. Although the estimates are only approximate ( because of methodological bias), there is published evidence of such omitted referrals and low rates of ESLD patients on waiting listing . Data on the prevalence of referrals to LT centres coming too late are scarce, and limited to patients with HCC .…”