“When information is not enough”: A model for understanding BRCA -positive previvors’ information needs regarding hereditary breast and ovarian cancer risk

Dean, Marleah; Scherr, Courtney L.; Clements, Meredith L.; Koruo, Rachel; Martínez, J. García; Ross, Alan O.

doi:10.1016/j.pec.2017.03.013

Cited by 42 publications

(39 citation statements)

References 24 publications

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“…Despite these caveats, the current sample provides novel insight into the experiences and needs of unique subgroups of young adults (e.g., non‐attenders of genetic clinics, emerging adult males). The findings indicate potential information differences depending on genetic clinic attendance and are consistent with the stratification of resources and information support (Dean et al, ). Possible advancements in technological platforms to reach pre‐consultation at‐risk young adults are likely, yet further research is needed with a larger sample to expound upon these findings.…”

Section: Discussionsupporting

confidence: 82%

Health professional and at‐risk BRCA young adult perspectives about information needs: What does Gen Y need to know?

Young

Butow

Tucker

et al. 2019

Journal of Genetic Counseling

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Young adults at risk of a hereditary condition require the provision of accurate information to make an informed decision about genetic testing and risk management options. At‐risk young adults’ (18‐ to 40‐year olds) preferences for information and resources, and genetic‐related health professionals' (GHPs) views on young adults’ information needs, are largely unknown in the literature. This study aimed to clarify and compare the information needs of emerging (18‐ to 25‐year olds) and early (26‐ to 40‐year olds) adults. Resource preferences of young adults were also explored. Findings are drawn from two datasets: questionnaires and semi‐structured interviews with at‐risk young adults from BRCA1 or BRCA2 families (N = 32), and focus groups with GHPs (N = 73) working in Australian familial cancer clinics. Both datasets were analyzed using framework analysis. Emerging adults, particularly those who had not attended a clinic, wanted to know the rationale for genetic testing and basic genetic facts. Early adults were concerned about reproductive issues and cancer risk for future or current children. Information needs reported by young adults but not reported by GHPs include male cancer risk, finding reputable information, understanding test results (e.g., negative), and understanding risk terminology (e.g., lifetime cancer risk). Young adults’ satisfaction with current information received was suboptimal, yet uptake of genetic‐related resources was generally low. Getting information to this cohort remains a challenge for GHPs. Emerging adults showed a preference to obtain information through technologically‐based formats (e.g., websites, social media), whereas early adults used a wider range of formats (e.g., websites, booklets). Awareness of and access to genetic information prior to genetic clinic attendance is needed. A review of the utility of current resources available for at‐risk young adults would be helpful.

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Section: Discussionsupporting

confidence: 82%

Health professional and at‐risk BRCA young adult perspectives about information needs: What does Gen Y need to know?

Young

Butow

Tucker

et al. 2019

Journal of Genetic Counseling

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“…However, some women in our study who were managing the process of genetic testing at the same time as their cancer diagnosis and treatment found the process overwhelming, as has been reported elsewhere [27]. Dean et al [28] suggest that women who are BRCA-positive but have not had a cancer diagnosis have different information needs than those who are currently or have previously been diagnosed and treated for cancer. This may be an important area for future research.…”

Section: Limitations and Implications For Future Researchsupporting

confidence: 62%

Using patient perspectives to inform communication training materials for health care professionals discussing BRCA mutation testing

Shilling

Catt

Jenkins

et al. 2020

Breast Cancer Res Treat

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Purpose As demand for genetic testing grows and a wide range of health care professionals (HCPs) are potentially involved in discussions about testing and delivering results, we developed an educational package to help HCPs with these conversations. Methods To inform the content of training materials, we conducted interviews with 11 women four of whom had BRCA1 and seven with BRCA2 mutations. Five women had or were currently receiving breast cancer treatment. Ages ranged from 38 to 77 years. Interviews were audio-recorded, transcribed verbatim and analysed using the Framework approach to thematic analysis. Results We identified 18 themes and 12 subthemes across the interviews, encompassed by six overarching themes: risk, decision-making, information and understanding, communication and improvement, accessing the system: process and frustration, emotional and social drivers. Conclusions The findings informed the didactic components of an educational communication workshop and a summary document for attendees. Qualitative interviews provide an important way of incorporating the patient perspective into communication training materials for HCPs by highlighting key issues that matter most to the patient.

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“…Skop et al (2018) found that men with breast cancer risks often differentiate themselves from women by, for example, referring to their screening and breast cancer risk using the word Bchest^rather than Bbreast.^Similarly, we found that the men in our study wanted to differentiate their risks from the risks of women and do so by acquiring more personalized and targeted information. Dean et al (2017) note that women often desire information through personal stories and/or emotional support, while the men in our study discussed a preference for statistics and lists. The differences between our results and studies discussing women's information needs show that information available for men is significantly lagging behind what is available for women, and the information that is provided is not being provided in a way men prefer.…”

Section: Discussionmentioning

confidence: 76%

“…While some research has examined cancer patients and cancer survivors' information needs (Carey et al 2012;Kent et al 2012) as well as the information needs of female BRCApositive patients who have not been diagnosed with cancer (Dean 2016), men with BRCA-related cancer risks have distinct needs in regard to their information handling and use. For example, while Dean et al (2017) found women go through four phases in their information needs, our male participants did not discuss their information needs across a timeline, but rather focused on the overall dearth of information available for men. In fact, although women have discussed uncertainty regarding their future, cancer scares, and motherhood, the men in this study almost exclusively discussed only the uncertainty that a lack of clear information provoked (Dean 2016).…”

Section: Discussionmentioning

confidence: 95%

“I Am Uncertain About What My Uncertainty Even Is”: Men's Uncertainty and Information Management of Their BRCA‐Related Cancer Risks

Rauscher

Dean

Campbell‐Salome

2018

Journal of Genetic Counseling

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Men with a germline pathogenic BRCA1 or BRCA2 variant have increased risks for developing breast, pancreatic, prostate, and melanoma cancers, but little is known about how they understand and manage their cancer risks. This study examines how men with BRCA-related cancer risks manage uncertainty and information about their risks. Twenty-five men who were either a BRCA carrier or have a BRCA-positive first-degree family member that put the participant at 50% chance of also being a BRCA carrier were interviewed for this study. Using uncertainty management theory as a theoretical framework, this study demonstrates that men manage uncertainty by seeking information from female family members, websites, and healthcare providers, and are under-informed about their cancer risks. Further, in handling their information, men prefer information about cancer risk percentages and screening recommendations in the form of lists presented to them via websites, printed literature, proactive healthcare providers, and an identifiable male spokesperson. Finally, men used BRCA-related cancer risk information to make decisions about whether or not to engage in screening and prevention, manage their BRCA-related cancer risks, and overall family well-being-yet often at the expense of their own individual risks. Implications for genetic counseling and family conversations are discussed.

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“When information is not enough”: A model for understanding BRCA -positive previvors’ information needs regarding hereditary breast and ovarian cancer risk

Cited by 42 publications

References 24 publications

Health professional and at‐risk BRCA young adult perspectives about information needs: What does Gen Y need to know?

Health professional and at‐risk BRCA young adult perspectives about information needs: What does Gen Y need to know?

Using patient perspectives to inform communication training materials for health care professionals discussing BRCA mutation testing

“I Am Uncertain About What My Uncertainty Even Is”: Men's Uncertainty and Information Management of Their BRCA‐Related Cancer Risks

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