title: [Perception of information in through an survey educational booklet on biomedical research oncology: among 129 patients eligible for a clinical trial].
abstract: The purpose of this study was to evaluate patients' opinion on the content of an educational booklet (EB) on the objectives of the biomedical research in oncology, and, on the respect of their rights in case of participation to a clinical trial (CT). One hundred and twenty-nine patients treated for cancer at the Institut Paoli-Calmettes (Marseilles, France) and eligible for a CT were included in the study. They received the EB with the information letter and the informed consent sheet related to the CT. After reading, patients completed a survey questionnaire (10 items). About 84% of them stated that the EB content was comprehensible by the majority of patients. However, 18.2% required more information on the different phases of CTs and 39.4% more information on their own treatments. Furthermore, 41.4% were not/not entirely assured that they would receive all the information in case of participation to a CT and about 23% that their rights would be respected. Only 9.6% of patients knew the existence of the local ethical committees (CCPPRB); its intervention (information provided by the EB) was not considered as reassuring by 28.6% of patients. This study has important implications for patients eligible for CTs.
authors.affiliation: Institut Paoli-Calmettes, 232, boulevard de Sainte-Marguerite, BP 156, 13273 Marseille, France.
authors.forename: Dominique
authors.initials: D
authors.lastname: Genre
authors.forename: Christel
authors.initials: C
authors.lastname: Protière
authors.forename: Geneviève
authors.initials: G
authors.lastname: Macquart-Moulin
authors.forename: Dominique
authors.initials: D
authors.lastname: Maraninchi
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D035843:Biomedical Research; D002986:Clinical Trials as Topic; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy; D010174:Pamphlets; D010353:Patient Education as Topic / Q000379:methods / Q000592:standards*
vernacular_title: Perception de l'information à travers une brochure sur la recherche biomédicale en cancérologie : Enquête auprès de 129 patients éligibles pour un essai clinique.