Cancer genetic health communication in families tested for hereditary breast/ovarian cancer risk: a qualitative investigation of impact on children’s genetic health literacy and psychosocial adjustment

Tercyak, Kenneth P.; Bronheim, Suzanne; Kahn, Nicole F.; Robertson, Hillary A.; Anthony, Bruno J.; Mays, Darren; O’Neill, Suzanne C.; Peterson, Susan K.; Miesfeldt, Susan; Peshkin, Beth N.; DeMarco, Tiffani A.

doi:10.1093/tbm/ibz012

Cited by 8 publications

(19 citation statements)

References 43 publications

(39 reference statements)

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“…Furthermore, our study cohort was likely to inherit a selection bias toward participants prone to above-average health habits, as it has been shown that a prior cancer disease is likely to have confounding effects on subsequent health behavior [ 70 ]. Especially the fact that a g BRCA1/2 mutation or cancer diagnosis often occurs within the familial surrounding, participants—whether themselves diseased or not—are likely to be sensitized for a more proactive engagement toward lifestyle changes [ 71 ]. We also did not control for special dietary habits or sport programs of the participants prior to SE, hence we could not account for potentially confounding and/or prolonging effects of individual health behavior on the biomarkers.…”

Section: Discussionmentioning

confidence: 99%

Physical activity and Mediterranean diet as potential modulators of osteoprotegerin and soluble RANKL in gBRCA1/2 mutation carriers: results of the lifestyle intervention pilot study LIBRE-1

Neirich

Yahiaoui-Doktor

Lammert

et al. 2021

Breast Cancer Res Treat

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Purpose Emerging evidence suggests that the progesterone-mediated receptor activator of nuclear factor κB (RANK)/soluble RANK ligand (sRANKL)/osteoprotegerin (OPG) pathway plays an important role in mammary carcinogenesis and is hyperactivated in germline (g)BRCA1/2 mutation carriers. We analyzed the effects of a 3-month intensive lifestyle intervention within the LIBRE-1 study on the serum levels of OPG and sRANKL and hypothesized that the intervention program provides a beneficial impact on the biomarkers by increasing OPG and reducing sRANKL serum concentrations. Methods Serum levels of OPG and sRANKL of 49 gBRCA1/2 mutation carriers were quantified using enzyme-linked immunosorbent assays. We used previously collected blood samples from participants of the prospective LIBRE-1 study, who were randomized into an intervention group (IG), increasing physical activity and adherence to the Mediterranean diet (MedD) through supervised sessions from study entry to the first study visit after 3 months and a usual-care control group (CG). Differences in biomarker levels before and after the 3-month intervention were tested within and between study groups. Results The lifestyle intervention resulted in a significant increase in OPG for participants in both the IG (q = 0.022) and CG (q = 0.002). sRANKL decreased significantly in the IG (q = 0.0464) and seemed to decrease in the CG (q = 0.5584). An increase in the intake of Omega-3 polyunsaturated fatty acids was significantly associated with an increase in OPG (r = 0.579, q = 0.045). Baseline serum levels of sRANKL were a strong predictor for the change of sRANKL in the course of the intervention (ß-estimate = − 0.70; q = 0.0018). Baseline physical fitness (assessed as VO2peak) might predict the change of OPG in the course of the intervention program (ß-estimate = 0.133 pg/ml/ml/min/kg; p = 0.0319; q = 0.2871). Conclusion Findings from this pilot study seem to confirm our hypothesis by showing an increase in OPG and decrease in sRANKL over a 3-month lifestyle intervention and suggest that increased physical activity and adherence to the MedD are potent modulators of the biomarkers OPG and potentially sRANKL.

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Section: Discussionmentioning

confidence: 99%

Physical activity and Mediterranean diet as potential modulators of osteoprotegerin and soluble RANKL in gBRCA1/2 mutation carriers: results of the lifestyle intervention pilot study LIBRE-1

Neirich

Yahiaoui-Doktor

Lammert

et al. 2021

Breast Cancer Res Treat

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“…Moreover, as information needs may be related to counselees’ characteristics such as their age [ 17 ], level of education [ [33] , [34] , [35] ], parental status [ 17 ], exposure to familial experience with BC [ 28 ], cancer risk perceptions [ 36 ], distress [ 19 ] and coping modalities [ 37 , 38 ], these aspects were further explored to identify subgroups of counselees particularly in need for enhanced communication and additional information on BC GRF and NGRF.…”

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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“…The next article by Tercyak et al [17] examines qualitative responses from adolescents and young adults with a parent that received genetic testing for hereditary breast and ovarian cancer risk. There are currently no guidelines for when and how minor children should be informed about hereditary breast and ovarian cancer risk, particularly when genetic testing for this risk is typically only offered to adults.…”

mentioning

confidence: 99%

“…There are currently no guidelines for when and how minor children should be informed about hereditary breast and ovarian cancer risk, particularly when genetic testing for this risk is typically only offered to adults. Tercyak et al [17] found that children responded to receiving information about their parent's hereditary breast and ovarian cancer risk in diverse ways, including demonstrating resilience in coping with the information. The findings also indicated that some children had misconceptions or inaccurate conclusions about the increased cancer risk [17].…”

mentioning

confidence: 99%

“…Tercyak et al [17] found that children responded to receiving information about their parent's hereditary breast and ovarian cancer risk in diverse ways, including demonstrating resilience in coping with the information. The findings also indicated that some children had misconceptions or inaccurate conclusions about the increased cancer risk [17]. Understanding how children and their families communicate about and use genetic risk information will continue to be essential for informing health interventions for these populations and has implications for policies around cascade testing and understanding of intergenerational outcomes associated with genetic testing.…”

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confidence: 99%

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Introduction to the special issue on child and family health: the role of behavioral medicine in understanding and optimizing child health

Herbert

Walker-Harding

et al. 2019

Translational Behavioral Medicine

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Clinicians are essential to building successful cross-disciplinary collaborations that facilitate dissemination of effective interventions for promoting child health. Policy: Across disciplinary fields, professionals who provide clinical services to children, as well as those conducting research, can partner together and with others to implement policies including legislation and public health efforts that aim to improve child health. Research: Behavioral medicine researchers are well-equipped to design, test, and implement novel solutions to optimize health among pediatric populations.

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Cancer genetic health communication in families tested for hereditary breast/ovarian cancer risk: a qualitative investigation of impact on children’s genetic health literacy and psychosocial adjustment

Cited by 8 publications

References 43 publications

Physical activity and Mediterranean diet as potential modulators of osteoprotegerin and soluble RANKL in gBRCA1/2 mutation carriers: results of the lifestyle intervention pilot study LIBRE-1

Physical activity and Mediterranean diet as potential modulators of osteoprotegerin and soluble RANKL in gBRCA1/2 mutation carriers: results of the lifestyle intervention pilot study LIBRE-1

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

Introduction to the special issue on child and family health: the role of behavioral medicine in understanding and optimizing child health

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