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Disclosure of research results: a randomized study on GENEPSO- PS cohort participants.
- Source :
- Health Expectations; Oct2016, Vol. 19 Issue 5, p1023-1035, 13p, 1 Diagram, 5 Charts
- Publication Year :
- 2016
-
Abstract
- Background: There exist no recommendations as to how aggregate research results should best be disclosed to long‐term cohort participants. Objective: To study the impact of cohort results disclosure documents of various kinds on participants’ satisfaction. Design: Randomized study with a 2x2 factorial design. Setting and participants: The GENEPSO‐PS cohort is used to study the psychosocial characteristics and preventive behaviour of both BRCA1/2 carriers and non‐carriers; 235 participants wishing to receive ‘information about the survey results’ answered a self‐administered questionnaire. Interventions: The impact of providing the following items in addition to a leaflet about aggregate psychosocial research results was investigated (i) an up‐to‐date medical information sheet about BRCA1/2 genetic topics, (ii) a photograph with the names of the researchers. Main outcome measures: Satisfaction profiles drawn up using cluster analysis methods. Results: Providing additional medical and/or research team information had no significant effect on satisfaction. The patients attributed to the ‘poorly satisfied’ group (n = 60, 25.5%) differed significantly from those in the ‘highly satisfied’ group (n = 51, 21.7%): they were younger [odds ratio (OR) = 0.96, 95% confidence interval (0.92–0.99), P = 0.028], less often had a daughter [OR = 4.87 (1.80–13.20), P = 0.002], had reached a higher educational level [OR = 2.94 (1.24–6.95), P = 0.014] and more frequently carried a BRCA1/2 mutation [OR = 2.73 (1.20–6.23), P = 0.017]. Conclusions: This original approach to disclosing research results to cohort participants was welcomed by most of the participants, but less by the more educated and by BRCA1/2 carriers. Although an easily understandable document is necessary, it might also be worth providing some participants with more in‐depth information. [ABSTRACT FROM AUTHOR]
Details
- Language :
- English
- ISSN :
- 13696513
- Volume :
- 19
- Issue :
- 5
- Database :
- Complementary Index
- Journal :
- Health Expectations
- Publication Type :
- Academic Journal
- Accession number :
- 118174728
- Full Text :
- https://doi.org/10.1111/hex.12390