Maximising survival: The main concern of women with hereditary breast and ovarian cancer who undergo genetic testing for BRCA1/2

Jeffers, Lisa; Morrison, Patrick J.; McCaughan, Eilís; Fitzsimons, Donna

doi:10.1016/j.ejon.2014.03.007

Cited by 14 publications

(15 citation statements)

References 40 publications

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“…Second, we articulate women’s thoughts about longevity, and confirm two perspectives present in the literature (Hallowell et al, 2001; Jeffers et al, 2014). Some women feel obligated to undergo RRBSO to stay alive longer for their children and save them from the potentially traumatic experience of seeing their mother suffer through ovarian cancer.…”

Section: Discussionsupporting

confidence: 73%

“…We also identified a conscious priority on living for today ( carpe diem ). Previous work has shown that women at elevated risk find a greater appreciation for life (Jeffers et al, 2014), and we expand on this by showing that a newfound sense of carpe diem motivates behavior change. Because thinking about longevity is a significant part of the decision making process for cancer prevention, women may benefit from psychological support to help them identify and execute specific actions consistent with their life priorities.…”

Section: Discussionmentioning

confidence: 61%

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Distinctive psychological and social experiences of women choosing prophylactic oophorectomy for cancer prevention

Meadows

Padamsee

Paskett

2018

Health Care for Women International

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Women known to have significantly elevated ovarian cancer risk due to genetic mutations or family history can reduce this risk by surgically removing both ovaries and fallopian tubes (RRBSO, risk-reducing bilateral salpingo-oophorectomy). We used interpretive phenomenological analysis (IPA) to explore the psychosocial experiences of women who chose RRBSO for cancer prevention. We extended the traditional use of IPA to compare the experiences of women who chose RRBSO for cancer prevention to those of women who underwent similar gynecologic surgery for benign indications. The analysis resulted in three superordinate themes describing women’s psychosocial experiences related to RRBSO: (1) psychological facets of cancer risk (2) social support and (3) shared medical decision making. Findings illustrate that women choosing RRBSO for cancer prevention experience heightened psychosocial challenges before and after surgery compared to women undergoing surgery for benign indication. Furthermore, they may need distinct types of information and support from healthcare providers.

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Section: Discussionsupporting

confidence: 73%

Section: Discussionmentioning

confidence: 61%

Distinctive psychological and social experiences of women choosing prophylactic oophorectomy for cancer prevention

Meadows

Padamsee

Paskett

2018

Health Care for Women International

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“…Hesse-Biber and An further describe how prevention decision making in BRCA mutation carriers involves filtering genetic information through a complex framework of diverse psychological, social, and emotional factors [165]. Other research suggests some of the specific complexities that may shape women’s choices (nonlinear movement toward a decision [162]; acting to both maximize survival and preserve a sense of self [166, 167]; processing cancer experiences of primary relatives [157, 159, 168]; interpreting BRCA mutations as pressure to act [169]; and experiencing the uncertainties and interventions associated with elevated risk) are similar to those associated with breast cancer itself [96, 145, 163, 168, 170, 171]. These preliminary observations suggest that deeper attention to the meanings women construct around levels of risk, prevention options, diseases, and treatments may be an important element in understanding their decision making.…”

Section: Women’s Prevention Decision Makingmentioning

confidence: 99%

Decision making for breast cancer prevention among women at elevated risk

et al. 2017

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Several medical management approaches have been shown to be effective in preventing breast cancer and detecting it early among women at elevated risk: 1) prophylactic mastectomy; 2) prophylactic oophorectomy; 3) chemoprevention; and 4) enhanced screening routines. To varying extents, however, these approaches are substantially underused relative to clinical practice recommendations. This article reviews the existing research on the uptake of these prevention approaches, the characteristics of women who are likely to use various methods, and the decision-making processes that underlie the differing choices of women. It also highlights important areas for future research, detailing the types of studies that are particularly needed in four key areas: documenting women’s perspectives on their own perceptions of risk and prevention decisions; explicit comparisons of available prevention pathways and their likely health effects; the psychological, interpersonal, and social processes of prevention decision making; and the dynamics of subgroup variation. Ultimately, this research could support the development of interventions that more fully empower women to make informed and values-consistent decisions, and to move towards favorable health outcomes.

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“…It has also been reported that women are more likely to seek out genetic testing if they have a greater need for certainty and lower tolerance for uncertainty . Additional qualitative studies have reported that women at high risk for breast cancer undergo BRCA1 / 2 genetic testing due to a sense of responsibility toward their family, particularly female relatives in younger generations . Regarding barriers to genetic testing, women have described financial concerns, fear of work and insurance discrimination, practical concerns such as difficulty taking time off from family and work obligations to attend the genetic counseling appointment, and lack of access to genetics services …”

Section: Introductionmentioning

confidence: 99%

Uptake of polygenic risk information among women at increased risk of breast cancer

et al. 2019

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Polygenic risk scores (PRSs) are increasingly being implemented to assess breast cancer risk. This study aimed to assess and determine factors associated with uptake of PRS among women at increased risk of breast cancer for whom genetic testing to date had been uninformative. Participants were recruited from the Variants in Practice study from which breast cancer PRS had been calculated. Four hundred women were notified by letter of the availability of their PRS and invited to complete a self‐administered survey comprising several validated scales. Considering non‐participants, uptake of PRS was between 61.8% and 42.1%. Multivariate logistic regression identified that women were more likely to receive their PRS if they reported greater benefits (odds ratio [OR] = 1.17, P = .011) and fewer barriers to receiving their PRS (OR = 0.80, P = .007), had completed higher level education (OR = 3.32, P = .004), and did not have daughters (0.29, P = .006). Uptake of breast cancer PRS varied according to several testing‐ and patient‐related factors. Knowledge of these factors will facilitate the implementation of polygenic testing in clinical practice and support informed decision making by patients.

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Maximising survival: The main concern of women with hereditary breast and ovarian cancer who undergo genetic testing for BRCA1/2

Cited by 14 publications

References 40 publications

Distinctive psychological and social experiences of women choosing prophylactic oophorectomy for cancer prevention

Distinctive psychological and social experiences of women choosing prophylactic oophorectomy for cancer prevention

Decision making for breast cancer prevention among women at elevated risk

Uptake of polygenic risk information among women at increased risk of breast cancer

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