Family communication of genetic test results among women with inherited breast cancer genes

Cragun, Deborah; Weidner, Anne; Tezak, Ann; Clouse, Kate; Pal, Tuya

doi:10.1002/jgc4.1356

Cited by 13 publications

(14 citation statements)

References 32 publications

(58 reference statements)

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“…This study is unique in that it will use a single control arm to simultaneously compare the effectiveness of two different interventions designed to impact two different behaviors that are both critical to maximizing the potential benefits from genetic testing for inherited cancer predisposition. The interventions target key behavioral change mechanisms (factors) based on our prior studies [29,43], which we anticipate will contribute to their efficacy.…”

Section: Discussionmentioning

confidence: 99%

“…Participants assigned to Arm A will be provided a unique username/password to access the GeneSHARE website, developed based on our preliminary work related to FC among those with genetic testing for inherited cancer [29,43,45]. This website contains interactive and narrative components to enhance FC of genetic test results including: 1) an introductory video explaining genetic test results and the importance of testing among family members; 2) a family sharing letter and singlepage handouts they can download, print, or email to assist in sharing genetic test results with at-risk family members; 3) a worksheet of reasons why others have shared test results instructing them to select or write in their own reasons for sharing; 4) a planning guide for listing when and how they will share results and followup with family members; 5) samples of how to start a conversation with family members and what to say if family members respond in a positive, unengaged, or negative fashion; 6) experiences of others who have overcome barriers to communicating with family members; and 7) supportive resources to help them address personal needs before and after sharing results.…”

Section: Trial Interventions and Primary Outcomesmentioning

confidence: 99%

“…Risk communication, cascade testing of family members, and risk-appropriate uptake of CRM options has the potential to vastly reduce cancer-related morbidity and mortality [16,36]; however, data primarily from academic centers suggest that 20-40% of family members are not informed about positive genetic test results [23,26,27,37]. Additionally, rates of family testing are substantially lower compared to overall rates of results disclosure [16,17,23,27,[38][39][40][41][42][43], with two recent studies reporting that only 30% of family members had undergone testing [39,42]. This may be due in part by the complexity of FC of genetic test results, which is often influenced by recognition of family members that are 'at risk', perceived responsibility to share, relationship type, physical or emotional closeness, perceptions of whether family members want to know, anticipation of family members' reactions, personal emotions, and perceptions that discussing cancer is not accepted within the family [21,25,44,45].…”

Section: Introductionmentioning

confidence: 99%

“…Furthermore, family members with whom P/LP variant results were shared underestimated their potential cancer risk and intentions to pursue genetic testing were low [47], highlighting the need to ensure messages used during FC of genetic test results convey the health threat and efficacy of actions that can reduce that threat. For example, we recently reported that in a sample of women with inherited breast cancer, most (94%) indicated they would find one or more resources helpful with FC and 70% reported using FC resources when telling family members about their genetic test result, including both printed and web-based information [43].…”

Section: Introductionmentioning

confidence: 99%

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IMProving care After inherited Cancer Testing (IMPACT) study: protocol of a randomized trial evaluating the efficacy of two interventions designed to improve cancer risk management and family communication of genetic test results

et al. 2021

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Background Implementing genetic testing for inherited cancer predisposition into routine clinical care offers a tremendous opportunity for cancer prevention and early detection. However, genetic testing itself does not improve outcomes; rather, outcomes depend on implemented follow-up care. The IMPACT study is a hybrid type I randomized effectiveness-implementation trial to simultaneously evaluate the effectiveness of two interventions for individuals with inherited cancer predisposition focused on: 1) increasing family communication (FC) of genetic test results; and 2) improving engagement with guideline-based cancer risk management (CRM). Methods This prospective study will recruit a racially, geographically, and socioeconomically diverse population of individuals with a documented pathogenic/likely pathogenic (P/LP) variant in an inherited cancer gene. Eligible participants will be asked to complete an initial trial survey and randomly assigned to one of three arms: A) GeneSHARE, a website designed to increase FC of genetic test results; B) My Gene Counsel’s Living Lab Report, a digital tool designed to improve understanding of genetic test results and next steps, including CRM guidelines; or C) a control arm in which participants continue receiving standard care. Follow-up surveys will be conducted at 1, 3, and 12 months following randomization. These surveys include single-item measures, scales, and indices related to: 1) FC and CRM behaviors and behavioral factors following the COM-B theoretical framework (i.e., capability, opportunity, and motivation); 2) implementation outcomes (i.e., acceptability, appropriateness, exposure, and reach); and 3) other contextual factors (i.e., sociodemographic and clinical factors, and uncertainty, distress, and positive aspects of genetic test results). The primary outcomes are an increase in FC of genetic test results (Arm A) and improved engagement with guideline-based CRM without overtreatment or undertreatment (Arm B) by the 12-month follow-up survey. Discussion Our interventions are designed to shift the paradigm by which individuals with P/LP variants in inherited cancer genes are provided with information to enhance FC of genetic test results and engagement with guideline-based CRM. The information gathered through evaluating the effectiveness and implementation of these real-world approaches is needed to modify and scale up adaptive, stepped interventions that have the potential to maximize FC and CRM. Trial registration This study is registered at Clinicaltrials.gov (NCT04763915, date registered: February 21, 2021). Protocol version September 17th, 2021 Amendment Number 04.

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Section: Discussionmentioning

confidence: 99%

Section: Trial Interventions and Primary Outcomesmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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IMProving care After inherited Cancer Testing (IMPACT) study: protocol of a randomized trial evaluating the efficacy of two interventions designed to improve cancer risk management and family communication of genetic test results

et al. 2021

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“…Many counselees at high hereditary BC risk reveal unmet needs about hereditary predisposition concerns [ 17 ]. Moreover, an identified genetic predisposition to cancer is not always shared among all family members [ [18] , [19] , [20] , [21] , [22] , [23] ], and when shared, it is generally incomplete or incorrect [ 24 ]. Thus, relatives of tested women may feel insufficiently informed.…”

Section: Introductionmentioning

confidence: 99%

Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant

Brédart

Pauw²,

Anota³

et al. 2021

The Breast

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Objectives Comprehensive breast cancer (BC) risk models integrating effects of genetic (GRF) and non-genetic risk factors (NGRF) may refine BC prevention recommendations. We explored the perceived information received on BC risk factors, and related characteristics, in female relatives of women with a BRCA1/2 or PALB2 pathogenic variant, undergoing BC risk assessment using the CanRisk© prediction tool. Methods Of 200 consecutive cancer-free women approached after the initial genetic consultation, 161 (80.5%) filled in questionnaires on their perception of information received and wished further information on BC risk factors (e.g., being a carrier of a moderate risk altered gene, personal genetic profile, lifestyles). Multilevel multivariate linear models were performed accounting for the clinician who met the counselee and exploring the effect of counselees’ socio-demographic, familial and psychological characteristics on the perceived extent of information received. Results Perceived no/little information received and wish for further information were more frequent for NGRF (>50%) than for GRF, especially high-risk genes (<20%). Perceived amount of information received and desire for further information were inversely correlated (p=<0.0001). Higher education level related to lower perceived levels of information received on GRF. Younger counselees' age (β = 0.13, p = 0.02) and less frequent engagement coping (e.g., inclination to solicit information) (β = 0.24, p = 0.02) related to lower perceived information received about NGRF. Other assessed counselees’ features were not found to be associated to GRF and NGRF information perception. Conclusions Awareness of counselees’ perceived lack of information on BC risk factors indicates a need to enhance evidence-based information on BC NGRF especially.

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Genetic Risk Disclosure and Family Sharing

Boumis¹,

Dean²

2022

The International Encyclopedia of Health Communication

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Detecting inherited predispositions to certain health risks such as cancer can lead to better prevention strategies and management decisions, ultimately reducing morbidity and health risk. Effectively distributing genetic risk information is contingent upon disclosure of risk within families. Family sharing can have a significant impact on family members' decision making concerning their own risk. Past research has found many reasons why individuals are motivated to share their genetic risk test results with their family members. Yet, there are inherent challenges present in these conversations. Understanding both the motivations and barriers to genetic risk disclosure is an important contribution to the efforts to increase cascade testing and the use of genetic counseling.

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Family communication of genetic test results among women with inherited breast cancer genes

Cited by 13 publications

References 32 publications

IMProving care After inherited Cancer Testing (IMPACT) study: protocol of a randomized trial evaluating the efficacy of two interventions designed to improve cancer risk management and family communication of genetic test results

IMProving care After inherited Cancer Testing (IMPACT) study: protocol of a randomized trial evaluating the efficacy of two interventions designed to improve cancer risk management and family communication of genetic test results

Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant

Genetic Risk Disclosure and Family Sharing

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