Background/Aims: To predict the potential public health impact of personal genomics, empirical research on public perceptions of these services is needed. In this study, ‘early adopters’ of personal genomics were surveyed to assess their motivations, perceptions and intentions. Methods: Participants were recruited from everyone who registered to attend an enrollment event for the Coriell Personalized Medicine Collaborative, a United States-based (Camden, N.J.) research study of the utility of personalized medicine, between March 31, 2009 and April 1, 2010 (n = 369). Participants completed an Internet-based survey about their motivations, awareness of personalized medicine, perceptions of study risks and benefits, and intentions to share results with health care providers. Results: Respondents were motivated to participate for their own curiosity and to find out their disease risk to improve their health. Fewer than 10% expressed deterministic perspectives about genetic risk, but 32% had misperceptions about the research study or personal genomic testing. Most respondents perceived the study to have health-related benefits. Nearly all (92%) intended to share their results with physicians, primarily to request specific medical recommendations. Conclusion: Early adopters of personal genomics are prospectively enthusiastic about using genomic profiling information to improve their health, in close consultation with their physicians. This suggests that early users (i.e. through direct-to-consumer companies or research) may follow up with the health care system. Further research should address whether intentions to seek care match actual behaviors.

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The value of genomic risk assessment depends upon patients making appropriate behavioral changes in response to increased risk leading to disease prevention and early detection. To date, few studies have investigated consumers’ response to personalized genomic disease risk information. To address this gap, we conducted semi-structured interviews with 60 adults participating in the Coriell Personalized Medicine Collaborative. The interviews took place after receiving results providing genomic and other risk information for up to eight common complex diseases. We found that participants were most likely to recall results which conferred an increased risk or those of particular personal interest. Participants understood the multi-factorial nature of common complex disease, and generally did not have negative emotional responses or overly deterministic perceptions of their results. Although most participants expressed a desire to use results to improve their health, a minority had actually taken action (behavior change or shared results with their doctor) at the time of the interview. These results suggest that participants have a reasonable understanding of genomic risk information and that provision of genomic risk information may motivate behavior change in some individuals; however additional work is needed to better understand the lack of change seen in the majority of participants.

Aim and objectives: To gain insight into the supportive care needs of Western Australian women experiencing gynaecological cancer. Background: Meeting the supportive care needs of people living with cancer is becoming increasingly important as advances in cancer treatment contribute to growing numbers of survivors. International evidence suggests between 24%-56% of women with gynaecological cancer have unmet supportive care needs and that psychological challenges, information provision and holistic care are priorities. No qualitative investigation has previously explored women's journey of gynaecological cancer within the Australian setting. Design: A qualitative descriptive design was used. Methods: Women treated for gynaecological cancer were recruited from a tertiary public women's hospital in Western Australia. Thematic analysis was conducted on qualitative data collected from 190 women over 12 months through written openended survey responses and telephone interviews. The COnsolidated criteria for REporting Qualitative research (COREQ) guided presentation of results. Results: Analysis yielded five themes and four subthemes: (a) Communication style directs the experience (subthemes: feeling supported; absence of empathy); (b) It's not just about the disease (subthemes: life has changed; holistic care); (c) A desire for information; (d) Drawing upon resilience; and (e) Navigating the system. Discussion: Exploration of the women's needs leads to the discussion of three concepts. Communication styles, harnessing women's resilience and alternative models of care are evaluated for their capacity to improve care and women's quality of life into survivorship. Recommendations are made for further research and possible interventions that can be translated into the clinical setting. Conclusion: Women with gynaecological cancer described complex often unmet supportive care needs and interactions with the healthcare system. Insight gained directs suggestions for improved service provision. | 1685 WILLIAMS et AL. S U PP O RTI N G I N FO R M ATI O N Additional supporting information may be found online in the Supporting Information section. How to cite this article: Williams N, Griffin G, Farrell V, Hauck YL. Gaining insight into the supportive care needs of women experiencing gynaecological cancer: A qualitative study. J Clin