title: Shared decision making in transplantation: how patients see their role in the decision process of accepting a donor liver.
abstract: At the time of the organ offer for transplantation, donor-related risks such as disease transmission and graft failure are weighed against the patient's risk of remaining on the waiting list. The patient's commonly inactive role in decision making and the timing and extent of donor-specific risk information have been discussed in the medical literature. This is the first study revealing the opinions of liver patients on these issues. Forty patients listed for liver transplantation and 179 liver transplant patients participated in an anonymous questionnaire-based survey. The majority of the patients wanted to be informed about donor-related risks (59.8%-74.8%). The preferred timing for being informed about donor-related risks was the time of the organ offer for 53.3% of the patients. Among these patients, 79.8% wished to be involved in making the decision to accept or not accept a liver for transplantation, 10.6% wished to make the final decision alone, and only 9.6% did not want to be involved in the decision-making process. Implementing this knowledge through the standardization of the content, the manner of transfer, and the amount of information that we provide to our patients will improve opportunities for shared decision making at different time points during the transplant allocation process. This will enable us to provide the same opportunities and care to every patient on the waiting list.
authors.affiliation: Section of Hepatobiliary Surgery and Liver Transplantation, Department of Surgery.
authors.forename: Sanna
authors.initials: S
authors.lastname: Op den Dries
authors.forename: Coby
authors.initials: C
authors.lastname: Annema
authors.forename: Aad P van den
authors.initials: AP
authors.lastname: Berg
authors.forename: Adelita V
authors.initials: AV
authors.lastname: Ranchor
authors.forename: Robert J
authors.initials: RJ
authors.lastname: Porte
mesh_terms: D002755:Choice Behavior; D046148:Donor Selection; D019538:Health Care Surveys; D006801:Humans; D007258:Informed Consent; D016031:Liver Transplantation / Q000009:adverse effects / Q000523:psychology*; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D010358:Patient Participation / Q000523:psychology*; D018570:Risk Assessment; D012307:Risk Factors; D011795:Surveys and Questionnaires; D066027:Transplant Recipients / Q000523:psychology*; D014850:Waiting Lists