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

Abstract

BackgroundThere exist no recommendations as to how aggregate research results should best be disclosed to long‐term cohort participants.ObjectiveTo study the impact of cohort results disclosure documents of various kinds on participants’ satisfaction.DesignRandomized study with a 2x2 factorial design.Setting and participantsThe 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.InterventionsThe 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 measuresSatisfaction profiles drawn up using cluster analysis methods.ResultsProviding 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].ConclusionsThis 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.

Experience of parents receiving results from a quality‐of‐life study in pediatric advanced cancer: A report from the PediQUEST study

“…Bereaved parents may particularly benefit from receiving results, perhaps related to an opportunity to reflect on their child's meaningful and altruistic contributions. Notably, quality‐of‐life research may be less valued by some parents, although we know it is clinically important to them . More research is needed to understand the best way to share quality‐of‐life research results in a pediatric advanced illness population, including disseminating results to patients.…”

“…Notably, quality-of-life research may be less valued by some parents, although we know it is clinically important to them. 8,17 More research is needed to understand the best way to share quality-of-life research results in a pediatric advanced illness population, including disseminating results to patients.…”

“…These guidelines state that a written lay summary should be shared and personal outreach should occur for particularly sensitive information. However, little is known about successfully sharing quality‐of‐life research results, which may be susceptible to confusion and low participant satisfaction . In the context of advanced pediatric cancer, sensitivities may be heightened.…”

“…However, little is known about successfully sharing quality-oflife research results, which may be susceptible to confusion and low participant satisfaction. 8,9 In the context of advanced pediatric cancer, sensitivities may be heightened. To inform this gap, the following report describes parent experience of receiving results of a quality-oflife study in children with advanced cancer.…”