title: 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 = 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.
authors.affiliation: Division of Gastroenterology, Duke University Medical Center, Durham, NC.|Duke Clinical Research Institute, Durham, NC.
authors.forename: Julius M
authors.initials: JM
authors.lastname: Wilder
authors.affiliation: Division of Gastroenterology, Duke University Medical Center, Durham, NC.
authors.forename: Omobonike O
authors.initials: OO
authors.lastname: Oloruntoba
authors.affiliation: Division of Gastroenterology, Duke University Medical Center, Durham, NC.|Duke Clinical Research Institute, Durham, NC.
authors.forename: Andrew J
authors.initials: AJ
authors.lastname: Muir
authors.affiliation: Division of Gastroenterology, Duke University Medical Center, Durham, NC.|Department of Medicine, Durham Veterans Affairs Medical Center, Durham, NC.
authors.forename: Cynthia A
authors.initials: CA
authors.lastname: Moylan
mesh_terms: D003430:Cross-Sectional Studies; D058625:End Stage Liver Disease / Q000523:psychology* / Q000601:surgery; D005260:Female; D006297:Health Services Accessibility / Q000706:statistics & numerical data*; D054625:Healthcare Disparities / Q000706:statistics & numerical data*; D006801:Humans; D016031:Liver Transplantation / Q000523:psychology* / Q000706:statistics & numerical data; D008297:Male; D008875:Middle Aged; D008913:Minority Groups; D057240:Patient Preference / Q000706:statistics & numerical data*; D044469:Racial Groups; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D009927:Tissue and Organ Procurement / Q000706:statistics & numerical data*; D035502:Trust; D014850:Waiting Lists