title: What Kind of Information About Marginal Donors Is Available Through Sources Other Than Health Care Professionals for Patients on the Waiting List for Organ Transplantation?
abstract: BACKGROUND
  The current organ shortage has necessitated expanding the criteria for potential donations to marginal donors (older or sick donors whose organs would have been considered unsuitable before). In France, physicians are not required to provide information to recipients about marginal donors except for hepatitis C or hepatitis B infection and non-heart-beating donations. We hypothesized that patients can be informed about these risks by other information sources than health care professionals, such as websites and patient associations.
  
  
  OBJECTIVE
  The objectives of the study were to identify the main health information sources of transplant patients other than health professionals and to evaluate the information provided by websites and associations to patients about the risks of transplantation from marginal donors.
  
  
  METHODS
  In this study, the information sources for kidney, liver, heart, and lung patients that had already received transplants or registered on waiting lists were identified by a survey in four transplant centers. Further, the information proposed by French and English language websites and patient associations were evaluated, respectively, by a systematic review of websites and a survey among the presidents of kidney, liver, heart, and lung patient associations.
  
  
  RESULTS
  For the first survey, (367/402) 91.3% responses were registered. Apart from health professionals identified as the principal information source (363/367) 98.9%, 19 liver and 28 heart patients searched for information on the websites, while 37 kidney and 42 lung patients were more informed by patients' associations. Our two last surveys showed that information about marginal donors is accessible by websites and (10/34) 30% of associations. All of the 60 Internet documents evaluated on French language and English language websites proposed information about marginal donors. Otherwise, (52/65) 80% of these documents were dedicated to health professionals and contained specialized information, difficult to understand by patients. Certain associations, (20/34) 59%, provided information about the risks of transplantation. There were 45/115 patients considering associations as their main information source that were informed by an association's website. However, only (5/22) 23% of associations communicated the risks of transplantation with patients through their websites.
  
  
  CONCLUSIONS
  Currently, patients want to be more informed by other information sources than health professionals, particularly by the websites. Nevertheless, they cannot always trust information proposed by these sources. They need to have their physicians inform them about specialized keywords and present them with reliable information sources. So reliable centers such as universities, transplant centers, and associations should develop the quality and quantity of information proposed to patients on their websites.
authors.affiliation: Paris center university hospitals, Public Health ward: Quality and Risk Management, Assistance Publique - Hôpitaux de Paris, Paris, France. sara.kamran@cch.aphp.fr.
authors.forename: Sara
authors.identifier: http://orcid.org/0000-0001-7799-3053
authors.initials: S
authors.lastname: Kamran
authors.forename: Yvon
authors.identifier: http://orcid.org/0000-0002-2606-1923
authors.initials: Y
authors.lastname: Calmus
authors.forename: Marie Pascale
authors.identifier: http://orcid.org/0000-0001-5180-8139
authors.initials: MP
authors.lastname: Pomey
authors.forename: Gwenaëlle
authors.identifier: http://orcid.org/0000-0002-2010-0207
authors.initials: G
authors.lastname: Vidal-Trécan
keywords: access to information; health information exchange; heart; kidney; liver; lung; marginal donor; online health information; organ transplantation