Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2015 Jul 14;4(3):e15.
doi: 10.2196/ijmr.4301.

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?

Sara Kamran  1 , Yvon Calmus, Marie Pascale Pomey, Gwenaëlle Vidal-Trécan
Affiliations

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?

Sara Kamran et al. Interact J Med Res. .

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.

Keywords: access to information; health information exchange; heart; kidney; liver; lung; marginal donor; online health information; organ transplantation.

PubMed Disclaimer

Conflict of interest statement

Conflicts of Interest: The funding agreement for this study ensured the author’s independence in designing the study, interpreting the data, writing, and publishing the report.

Figures

Figure 1
Figure 1
Flow chart of information proposed by associations to patients about the risks of transplantation.
See this image and copyright information in PMC

Similar articles

See all similar articles

References

    1. Agence de la Biomédecine. Agence de la biomédecine; 2013. [2015-05-08]. Le prélèvements d'organes en vue de greffe : Le rapport médical et scientifique du prélèvement et de la greffe en France http://www.agence-biomedecine.fr/annexes/bilan2012/donnees/organes/01-pr... .
    1. United Network for Organ Sharing. United Network for Organ Sharing; 2008. [2015-05-08]. Questions and answers for transplant candidates about kidney allocation policy https://www.unos.org/docs/Kidney_Brochure.pdf .
    1. Google AdWords. Google AdWords; 2013. Jul, [2015-01-20]. Google AdWords: Générateur de mots clés https://www.google.com/adwords/
    1. Bertrand X. Journal Officiel de la République Française (JOFR) Journal Officiel de la République Française (JOFR); 2010. Dec, [2015-01-20]. Arrêté du 23 décembre 2010 relatif aux protocoles prévus à l'article R. 1211-21 du code de la santé publique pour la mise en oeuvre de la dérogation permettant l'utilisaion d'organes ou de cellules de donneurs porteurs de marqueurs du virus de l'hépatite B et de virus de l'hépatite C http://www.legifrance.gouv.fr/affichTexte.do?cidTexte=JORFTEXT000023295004 .
    1. Antoine C, Tenaillon A. Agence de la Biomédecine. Agence de la Biomédecine; 2007. Apr, [2015-05-08]. Conditions à respecter pour réaliser des prélèvements de reins sur des donneurs à coeur arrêté dans un établissement de santé autorisé aux prélèvements d'organes http://www.urgences-serveur.fr/IMG/pdf/DVprotocole_V12_avril_2007.pdf .

LinkOut - more resources