Sociodemographic, psychosocial and clinical factors associated with uptake of genetic counselling for hereditary cancer: a systematic review

Willis, Amanda; Smith, Sian K; Meiser, Bettina; Ballinger, Mandy L.; Thomas, David M.; Young, Mary‐Anne

doi:10.1111/cge.12868

Cited by 45 publications

(48 citation statements)

References 60 publications

(233 reference statements)

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“…Contemplators in this study were younger, but no other demographic differences were found between groups. A recent systematic review of factors associated with uptake of genetic counseling for hereditary cancers suggested a positive association between genetic counseling uptake and education, SES and marital status, but these findings were inconsistent across studies included in the review [32]. …”

Section: Discussionmentioning

confidence: 99%

Health beliefs associated with readiness for genetic counseling among high risk breast cancer survivors

et al. 2019

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Purpose: Uptake of genetic counseling among breast cancer survivors is low. We used the Health Belief Model (HBM) to explore factors associated with readiness for genetic counseling among breast cancer survivors. Methods: Breast cancer survivors meeting NCCN genetic counseling referral criteria were recruited through clinics and community settings. Participants completed questionnaires capturing demographic and clinical information and factors guided by the HBM, including health beliefs, psychosocial variables, and cues to action. Using logistic regression, we examined whether the above variables differed based on readiness group (pre-contemplators, who did not plan to make a genetic counseling appointment, and contemplators, who planned to make a genetic counseling appointment in the next 1– 6 months). Results: Of 111 participants, 57% were pre-contemplators and 43% were contemplators. In the multivariable model, higher cancer worry was associated with increased odds of being a contemplator (OR=2.99; 95% CI=1.37–6.54) and higher perceived barriers to genetic counseling were associated with decreased odds of being a contemplator (OR=0.31; 95% CI= 0.11–0.85). Those who reported a family member encouraged them to get tested were more likely to be contemplators (OR=3.57; 95% CI=1.19– 10.70). Conclusions: Our results suggest key factors for predicting genetic counseling readiness include cancer worry, perceived barriers, and family influence. Implications for Cancer Survivors: Ideally genetic counseling occurs prior to treatment, but significant advantages exist for survivors. There is need for increased genetic counseling awareness. Better understanding of factors related to survivors’ decisions about counseling can inform tailored interventions to improve uptake and ultimately reduce cancer recurrence risk.

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Section: Discussionmentioning

confidence: 99%

Health beliefs associated with readiness for genetic counseling among high risk breast cancer survivors

et al. 2019

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“…Both male and female offspring of carriers have a 50% chance of inheriting the pathogenic variant (Petrucelli, Daly, & Feldman, ). Knowledge of a BRCA1/2 pathogenic variant in the family can influence decisions about genetic testing (Willis et al, ), family planning (Ormondroyd et al, ), and risk management (e.g., bilateral risk‐reducing mastectomy decreases the chances of a breast cancer by 90%–95%; Rebbeck et al, ), including potential implications for the individualization of cancer treatment (Tung & Garber, ). Thus, such knowledge has possible life‐enhancing implications not only for the patient but also for their relatives, including their current and future children.…”

Section: Introductionmentioning

confidence: 99%

Talking across generations: Family communication about BRCA1 and BRCA2 genetic cancer risk

Young

Butow

Rhodes

et al. 2019

Journal of Genetic Counseling

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While family communication about a BRCA1 or BRCA2 (BRCA1/2) pathogenic variant can be a catalyst for the uptake of risk‐reducing measures in young adults, disseminating information within families and across generations is complex. This study aimed to explore how young adults and their families communicate about a BRCA1/2 pathogenic variant, from a family systems perspective. In‐depth family interviews and questionnaires (N = 67 individuals; 21 families) were completed at four metropolitan and regional genetic clinics in Australia. Data involved thematic analysis and interpretation based on family systems theory, including the use of standardized measures. Six key themes were identified and explored: (1) Responsibility to protect, (2) “It's a woman's problem,” (3) Family culture influences communication, (4) Adversarial growth and connection, (5) Key events can be relational turning points, and (6) Health professionals can help. Family identities were solidified through the incorporation of a pathogenic variant in family scripts, while members of the family who held differing views to their families expressed less agreeableness and openness to disseminate information. The collective family's experience and perspective toward a pathogenic variant can influence a young adult's decision‐making about genetic testing, risk‐management, and family planning. The utilization of family therapy skills in routine practice would be helpful in facilitating communication and the inclusion of standardized measures is beneficial to identify individuals needing ongoing psychological support. Understanding relationship difficulties that arise from family members holding divergent views can offer insight into future research inquiry and areas of further training and clinical support.

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“…We identified published survey items described as perceived benefits (8 items), risks (10 items), barriers (2 items) and attitudes (15 items) related to genetic testing, and items describing genetic testing intention (7 items) [16][17][18][19][20][21][22] . Items were adapted to be FH-specific.…”

Section: Survey Designmentioning

confidence: 99%

Genetic Testing Preferences and Intentions in U.S. Patients with Clinically Diagnosed Familial Hypercholesterolemia

Wand

Sturm²,

Erby

et al. 2019

Preprint

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Purpose: Familial Hypercholesterolemia (FH) is a common Mendelian disorder characterized by elevated LDL cholesterol levels, which if untreated can cause premature heart disease. Less than 10% of cases in the US are diagnosed, and uptake of genetic testing is suboptimal. This study investigates decisionmaking factors associated with intentions to have FH genetic testing among patients clinically diagnosed with FH.Methods: Clinically diagnosed adults with FH and no genetic testing were recruited through the FH Foundation and lipid clinics. Participants completed a survey containing items capturing various reasons to engage in genetic testing.Results: Exploratory factor analysis of survey items identified three factors: (1) aversion to FH genetic information, (2) curiosity regarding medical/family history, (3) and psychological reassurance.Psychological reassurance was, in turn, the only significant predictor of genetic testing intentions. The effect of reassurance was qualified by aversion such that the inverse association between aversion and genetic testing intentions was greater among those with low perceived reassurance.Conclusion: Findings suggest that clinically diagnosed patients' decisions about FH genetic testing are driven principally by psychological reassurance.

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Sociodemographic, psychosocial and clinical factors associated with uptake of genetic counselling for hereditary cancer: a systematic review

Cited by 45 publications

References 60 publications

Health beliefs associated with readiness for genetic counseling among high risk breast cancer survivors

Health beliefs associated with readiness for genetic counseling among high risk breast cancer survivors

Talking across generations: Family communication about BRCA1 and BRCA2 genetic cancer risk

Genetic Testing Preferences and Intentions in U.S. Patients with Clinically Diagnosed Familial Hypercholesterolemia

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