When a gene mutation is identified in a research study following the death of the study participant, it is not clear whether such information should be made available to relatives. We report here an evaluation of the impact on relatives of being informed of study results that detected pathogenic BRCA2 mutations in a male relative, now deceased, who had early onset (under the age of 55) prostate cancer. The breast and ovarian cancer risk was unknown to the living relatives. Qualitative analysis of interviews with thirteen relatives indicated that those who had a higher risk perception, resulting from an awareness of cancer family history or experiential knowledge of cancer in their family, tended to adjust more easily to the results. All participants believed that genetics research results of clinical significance should be fed back to relatives. Those who were fully aware of the BRCA2 results and implications for themselves felt they had benefited from the information, irrespective of whether or not they had elected for genetic testing, because of the consequent availability of surveillance programs. Initial anxiety upon learning about the BRCA2 result was alleviated by genetic counselling. Factors influencing those who have not engaged with the information included scepticism related to the relative who attempted to inform them, young age and fear of cancer. Those who had not sought genetic counselling did not attempt further dissemination, and some were not undergoing regular screening. Implications for informed consent in genetics research programs, and the requirement for genetic counselling when research results are disclosed, are discussed.

Objectives: This study explores communication within families of clinically significant genetics research results, after the death of the patient participant. BRCA2 mutations were found in several men after their death from prostate cancer. Spouses were given the results in a genetic counselling session and asked to inform relatives.Methods: Cross-sectional, qualitative exploratory study. Interviews with 13 relatives, including informers and recipients of the information, were analysed using interpretative phenomenological analysis.Results: Dissemination was hampered when communication channels between relatives were limited, because of family rifts or socially distant or problematic relationships. When informing other branches of the family, relatives approached individuals in the generation of the deceased man, regardless of their risk status, who were then responsible for informing younger relatives. Most people informed by a relative did not seek genetic counselling. The informing relative may not have sufficient authority for the information either to be taken seriously or to challenge individual constructions about the aetiology of cancer. This impeded information transmission to further at-risk relatives. Most participants knew of relatives who had not been told about their cancer risk.Conclusions: The implications of this limited efficiency of information transfer among relatives are discussed in the context of a potential role for genetics services in contacting atrisk relatives directly.

A minority of symptomatic patients opt for telephone psychological therapy; however, where they do, there are significant improvements indicating that telephone-delivered therapy is feasible in patients with high needs. Findings are discussed in relation to current issues on the implementation of distress screening and psychological therapy provision within clinical settings.

Older patients differ on information satisfaction showing a preference for doctors to make treatment decisions. For supportive care, there were few age differences; however, the SCNS sexuality and patient care and support domains indicate greater need in younger patients around the 3-month period following diagnosis. With a few exceptions, individual rather than age-specific needs determine supportive and informational care requirements.