Disclosure of research results: a randomized study on GENEPSO-PS cohort ă participants

Julien Mancini (), Elodie Le Cozannet, Anne-Déborah Bouhnik (), Noémie Resseguier (), Christine Lasset, Emmanuelle Mouret-Fourme, Catherine Noguès and Claire Julian-Reynier
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Julien Mancini: SESSTIM - U912 INSERM - Aix Marseille Univ - IRD - Sciences Economiques et Sociales de la Santé & Traitement de l'Information Médicale - IRD - Institut de Recherche pour le Développement - AMU - Aix Marseille Université - INSERM - Institut National de la Santé et de la Recherche Médicale, IPC - Institut Paoli-Calmettes - Fédération nationale des Centres de lutte contre le Cancer (FNCLCC), BiosTIC - Biostatistique et technologies de l'information et de la communication (BioSTIC) - [Hôpital de la Timone - APHM] - APHM - Assistance Publique - Hôpitaux de Marseille - TIMONE - Hôpital de la Timone [CHU - APHM]
Elodie Le Cozannet: CANBIOS - Ligue Contre le Cancer (CANBIOS) - SESSTIM - U1252 INSERM - Aix Marseille Univ - UMR 259 IRD - Sciences Economiques et Sociales de la Santé & Traitement de l'Information Médicale - IRD - Institut de Recherche pour le Développement - AMU - Aix Marseille Université - INSERM - Institut National de la Santé et de la Recherche Médicale
Anne-Déborah Bouhnik: SESSTIM - U912 INSERM - Aix Marseille Univ - IRD - Sciences Economiques et Sociales de la Santé & Traitement de l'Information Médicale - IRD - Institut de Recherche pour le Développement - AMU - Aix Marseille Université - INSERM - Institut National de la Santé et de la Recherche Médicale
Noémie Resseguier: SESSTIM - U912 INSERM - Aix Marseille Univ - IRD - Sciences Economiques et Sociales de la Santé & Traitement de l'Information Médicale - IRD - Institut de Recherche pour le Développement - AMU - Aix Marseille Université - INSERM - Institut National de la Santé et de la Recherche Médicale
Christine Lasset: Biostatistiques santé [LBBE] - Département biostatistiques et modélisation pour la santé et l'environnement [LBBE] - LBBE - Laboratoire de Biométrie et Biologie Evolutive - UMR 5558 - UCBL - Université Claude Bernard Lyon 1 - Université de Lyon - VAS - VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement - CNRS - Centre National de la Recherche Scientifique, Equipe de prévention et épidémiologie génétique - Centre Léon Bérard [Lyon]
Emmanuelle Mouret-Fourme: Hôpital René Huguenin [Saint-Cloud] - ICSC - Institut Curie - Saint Cloud
Catherine Noguès: Hôpital René Huguenin [Saint-Cloud] - ICSC - Institut Curie - Saint Cloud
Claire Julian-Reynier: SESSTIM - U912 INSERM - Aix Marseille Univ - IRD - Sciences Economiques et Sociales de la Santé & Traitement de l'Information Médicale - IRD - Institut de Recherche pour le Développement - AMU - Aix Marseille Université - INSERM - Institut National de la Santé et de la Recherche Médicale

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Abstract: There exist no recommendations as to how aggregate research ă results should best be disclosed to long-term cohort participants. ă Objective To study the impact of cohort results disclosure documents of ă various kinds on participants' satisfaction. ă Design Randomized study with a 2x2 factorial design. ă Setting and participants The GENEPSO-PS cohort is used to study the ă psychosocial characteristics and preventive behaviour of both BRCA1/2 ă carriers and non-carriers; 235 participants wishing to receive ă `information about the survey results' answered a self-administered ă questionnaire. ă Interventions The impact of providing the following items in addition to ă a leaflet about aggregate psychosocial research results was investigated ă (i) an up-to-date medical information sheet about BRCA1/2 genetic ă topics, (ii) a photograph with the names of the researchers. ă Main outcome measures Satisfaction profiles drawn up using cluster ă analysis methods. ă Results Providing additional medical and/or research team information ă had no significant effect on satisfaction. The patients attributed to ă the `poorly satisfied' group (n = 60, 25.5%) differed significantly ă from those in the `highly satisfied' group (n = 51, 21.7%): they were ă younger [odds ratio (OR) = 0.96, 95% confidence interval (0.92-0.99), ă P = 0.028], less often had a daughter [OR = 4.87 (1.80-13.20), P = ă 0.002], had reached a higher educational level [OR = 2.94 (1.24-6.95), ă P = 0.014] and more frequently carried a BRCA1/2 mutation [OR = 2.73 ă (1.20-6.23), P = 0.017]. ă Conclusions This original approach to disclosing research results to ă cohort participants was welcomed by most of the participants, but less ă by the more educated and by BRCA1/2 carriers. Although an easily ă understandable document is necessary, it might also be worth providing ă some participants with more in-depth information.

Keywords: quality (search for similar items in EconPapers)
Date: 2016-10
Note: View the original document on HAL open archive server: https://hal.science/hal-01482389v1
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Published in Health Expectations, 2016, 19 (5), pp.1023-1035. ⟨10.1111/hex.12390⟩

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Persistent link: https://EconPapers.repec.org/RePEc:hal:journl:hal-01482389

DOI: 10.1111/hex.12390

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