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

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2016-07

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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 = 0.03) or went to the transplant center if referred (44.4% versus 71.1%; P = 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.

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10.1002/lt.24452

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Wilder, Julius M, Omobonike O Oloruntoba, Andrew J Muir and Cynthia A Moylan (2016). Role of patient factors, preferences, and distrust in health care and access to liver transplantation and organ donation. Liver Transpl, 22(7). pp. 895–905. 10.1002/lt.24452 Retrieved from https://hdl.handle.net/10161/12749.

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Scholars@Duke

Wilder

Julius Middleton Wilder

Associate Professor of Medicine
Oloruntoba

Omobonike Oyindasola Oloruntoba

Assistant Professor of Medicine
Muir

Andrew Joseph Muir

Professor of Medicine
  • Hepatitis C 
  • Primary sclerosing cholangitis
  • Cirrhosis
  • Liver Transplantation
  • Clinical Trials
  • Healthcare disparities in liver disease 
  • Outcomes Research
Moylan

Cynthia Ann Moylan

Associate Professor of Medicine

My research interests focus on the study of chronic liver disease and primary liver cancer, particularly from metabolic dysfunction associated steatotic liver disease (MASLD), formerly called nonalcoholic fatty liver disease (NAFLD).  As part of the MASLD Research Team at Duke, we are investigating the role of environmental contaminants, epigenetics, and genetics on the development of advanced fibrosis and liver cancer from MASLD and other chronic liver diseases.  We are also interested in understanding risks for progressive liver disease including developmental programming and in utero exposures and have been investigating these risks through studies of the Newborn Epigenetics Study (NEST).  The long term goal of our research is to develop non-invasive biomarkers to identify those patients at increased risk for cirrhosis and end stage liver disease in order to risk stratify patients as well as to develop better preventative and therapeutic strategies.


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