Dataset Information

Online BRCA1/2 screening in the Australian Jewish community: a qualitative study.

ABSTRACT: Screening programmes for BRCA1/2 Jewish Founder mutations (JFM) in the Jewish community have been advocated internationally. Implementation of these programmes could decrease morbidity and mortality of BRCA1/2 JFM carriers through the uptake of cancer screening strategies and risk-reducing surgery. An online programme offered to the Sydney Jewish community that delivers pre-test information and collects consent for BRCA1/2 JFM testing via a website is currently being evaluated (JeneScreen). Forty-three participants from JeneScreen were invited to participate in a sub-study, of semi-structured pre- and post-result telephone interviews. Eleven participants consented to the sub-study. The interviews explored their experiences regarding the online model of obtaining pre-test genetic information, giving consent and receiving results. Inductive thematic analysis was carried out on the interviews. Overarching themes identified include (1) embracing online testing, (2) the online pre-test experience, (3) the result notification experience, (4) concerns associated with online testing and (5) testing as a responsibility. Overall, participants were highly satisfied with online BRCA1/2 JFM testing, an indication that the a website for pre-test information provision is an acceptable alternative to in-person genetic counselling for BRCA1/2 JFM screening and represents a feasible model for future community screening efforts.

SUBMITTER: Yuen J

PROVIDER: S-EPMC7295878 | biostudies-literature | 2020 Jul

REPOSITORIES: biostudies-literature

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Online BRCA1/2 screening in the Australian Jewish community: a qualitative study.

Yuen Jeanette J Cousens Nicole N Barlow-Stewart Kristine K O'Shea Rosie R Andrews Lesley L

Journal of community genetics 20191226 3

Screening programmes for BRCA1/2 Jewish Founder mutations (JFM) in the Jewish community have been advocated internationally. Implementation of these programmes could decrease morbidity and mortality of BRCA1/2 JFM carriers through the uptake of cancer screening strategies and risk-reducing surgery. An online programme offered to the Sydney Jewish community that delivers pre-test information and collects consent for BRCA1/2 JFM testing via a website is currently being evaluated (JeneScreen). Fort ...[more]

PMID: 31879826

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Project description:IntroductionPeople of Ashkenazi Jewish (AJ) ancestry are more likely than unselected populations to have a BRCA1/2 pathogenic variant, which cause a significantly increased risk of breast, ovarian and prostate cancer. Three specific BRCA1/2 pathogenic variants, referred to as BRCA-Jewish founder mutations (B-JFM), account for >90% of BRCA1/2 pathogenic variants in people of AJ ancestry. Current practice of identifying eligible individuals for BRCA testing based on personal and/or family history has been shown to miss at least 50% of people who have one of these variants. Here we describe the protocol of the JeneScreen study-a study established to develop and evaluate two different population-based B-JFM screening programmes, offered to people of Jewish ancestry in Sydney and Melbourne, Australia.Methods and analysisTo rmeasure the acceptability of population-based B-JFM screening in Australia, two screening programmes using different methodologies have been developed. The Sydney JeneScreen programme provides information and obtains informed consent by way of an online tool. The Melbourne JeneScreen programme does this by way of community sessions attended in person. Participants complete questionnaires to measure clinical and psychosocial outcomes at baseline, and for those who have testing, 2 weeks postresult. Participants who decline testing are sent a questionnaire regarding reasons for declining. Participants with a B-JFM are sent questionnaires 12-month and 24-month post-testing. The questionnaires incorporate validated scales, which measure anxiety, decisional conflict and regret, and test-related distress and positive experiences, and other items specifically developed or adapted for the study. These measures will be assessed for each programme and the two population-based B-JFM screening methods will be compared.Ethics and disseminationInstitutional Human Research Ethics Committee approval was obtained from the South Eastern Area Health Service Human Research Ethics Committee: HREC Ref 16/125.Following the analysis of the study results, the findings will be disseminated widely through conferences and publications, and directly to participants in writing.

Project description:IntroductionDespite the desire of pharmacists to provide new and more clinically focused services, strain on the community pharmacist workforce is a known barrier to their service provision. Causes are unclear, although the impact of increased workload, as well as broader role-related and systemic causes have been suggested.AimsTo (1) explore the role strain, stress and systemic factors affecting Australian community pharmacists' provision of cognitive pharmacy services (CPS), using the Community Pharmacist Role Stress Factor Framework (CPRSFF), and (2) adapt the CPRSFF to the local setting.MethodsSemi-structured interviews were conducted with Australian community pharmacists. Transcripts were analysed with the framework method to verify and adapt the CPRSFF. Thematic analysis of particular codes identified personal outcomes and causative patterns in perceived workforce strain.ResultsTwenty-three registered pharmacists across Australia were interviewed. CPS role benefits included: helping people, and increased competency, performance, pharmacy financial return, recognition from the public and other health professionals, and satisfaction. However, strain was worsened by organisational expectations, unsupportive management and insufficient resources. This could result in pharmacist dissatisfaction and turnover in jobs, sector or careers. Two additional factors, workflow and service quality, were added to the framework. One factor, "View of career importance versus partner's career", was not apparent.ConclusionThe CPRSFF was found to be valuable in exploring the pharmacist role system and analysing workforce strain. Pharmacists weighed up positive and negative outcomes of work tasks, jobs and roles to decide task priority and personal job significance. Supportive pharmacy environments enabled pharmacists to provide CPS, which increased workplace and career embeddedness. However, workplace culture at odds with professional pharmacist values resulted in job dissatisfaction and staff turnover.

Project description:BackgroundPrevious research has demonstrated the importance of search engines, websites, online discussion groups and social media groups for women in developed countries looking for health and medical information, but few studies have focused on Australian women. The Australian Women and Digital Health Project was designed to investigate how Australian women from a range of age groups and locations used digital health technologies across the full spectrum available to them. The findings on their use of online information and decision-making in relation to seeking face-to-face medical advice are discussed in this article.MethodsQualitative research, including focus group discussions (24 participants) and face-to-face (12 participants) and telephone (30 participants) semi-structured interviews was conducted with a total of 66 Australian women aged between 21 and 74. The focus groups and interviews were transcribed and analysed using inductive thematic analysis sensitised by a feminist new materialism theoretical standpoint. This involved identifying the dimensions of affordances, relational connections, affective forces and agential capacities in the women's accounts.ResultsAll participants regularly used online sources to find health information, advice and support. We identified six key agential capacities relating to these ways in which the women enacted online health information seeking: 1) self-screening; 2) preparing for and following up a consultation; 3) selective engagement; 4) caring for others; 5) creating and sharing new information; and 6) challenging medical authority. The affordances of accessibility and convenience of online sources, relational connections between women and trusted sources (both online and offline) and between women and family members on whose behalf they sought information and affective forces such as trust, the need for reassurance and frustration and anger with deficient healthcare services contributed to these capacities.ConclusionsWomen engaged in complex interactions with online information, actively and creatively using it in diverse ways in their negotiations with seeking face-to-face medical expertise. Their online practices generated a set of agential capacities that help them to assess whether they or their family members need medical attention, supplement or challenge the medical advice they have already received or generate and share their own information.

Project description:BackgroundTechnological advances raise the possibility of systematic population-based genetic testing for cancer-predisposing mutations, but it is uncertain whether benefits outweigh disadvantages. We directly compared the psychological/quality-of-life consequences of such an approach to family history (FH)-based testing.MethodsIn a randomized controlled trial of BRCA1/2 gene-mutation testing in the Ashkenazi Jewish (AJ) population, we compared testing all participants in the population screening (PS) arm with testing those fulfilling standard FH-based clinical criteria (FH arm). Following a targeted community campaign, AJ participants older than 18 years were recruited by self-referral after pretest genetic counseling. The effects of BRCA1/2 genetic testing on acceptability, psychological impact, and quality-of-life measures were assessed by random effects regression analysis. All statistical tests were two-sided.ResultsOne thousand, one hundred sixty-eight AJ individuals were counseled, 1042 consented, 1034 were randomly assigned (691 women, 343 men), and 1017 were eligible for analysis. Mean age was 54.3 (SD = 14.66) years. Thirteen BRCA1/2 carriers were identified in the PS arm, nine in the FH arm. Five more carriers were detected among FH-negative FH-arm participants following study completion. There were no statistically significant differences between the FH and PS arms at seven days or three months on measures of anxiety, depression, health anxiety, distress, uncertainty, and quality-of-life. Contrast tests indicated that overall anxiety (P = .0001) and uncertainty (P = .005) associated with genetic testing decreased; positive experience scores increased (P = .0001); quality-of-life and health anxiety did not change with time. Overall, 56% of carriers did not fulfill clinical criteria for genetic testing, and the BRCA1/2 prevalence was 2.45%.ConclusionCompared with FH-based testing, population-based genetic testing in Ashkenazi Jews doesn't adversely affect short-term psychological/quality-of-life outcomes and may detect 56% additional BRCA carriers.

Dataset Information

Online BRCA1/2 screening in the Australian Jewish community: a qualitative study.

Publications

Online BRCA1/2 screening in the Australian Jewish community: a qualitative study.

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