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?
Notice bibliographique
Résumé
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.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,005 | 0,051 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,003 | 0,003 |
| Études des sciences et des technologies | 0,001 | 0,001 |
| Communication savante | 0,002 | 0,004 |
| Science ouverte | 0,000 | 0,001 |
| Intégrité de la recherche | 0,001 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,006 | 0,001 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».