Medical knowledge and information needs among women with pathogenic variants in moderate‐risk genes for hereditary breast cancer attending genetic counseling at an academic hospital in Germany—A qualitative approach

Stracke, Claudia; Lemmen, Clarissa; Rhiem, Kerstin; Schmutzler, Rita K.; Kautz-Freimuth, Sibylle; Stock, Stephanie

doi:10.1002/jgc4.1536

Cited by 8 publications

(3 citation statements)

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“…One reason for this difference might be the age of our participants, with only one woman under the age of 30. This young previvor’s concerns were further elaborated in Stracke et al [ 26 ] and were similar to those of the young previvors described by Werner-Lin and Hoskins and Greene [ 55 , 56 ]. Another reason might be the absence of an alternative prevention option other than the multimodal intensified breast surveillance program, since RRM is not generally recommended for carriers of pathogenic variants in MBCG in Germany [ 18 , 58 ].…”

Section: Discussionsupporting

confidence: 76%

“…Additionally, women receive the following written information: a brochure on hereditary breast and ovarian cancer in general, a brochure on the multimodal intensified breast surveillance program, a doctor’s letter that summarizes the PTGC and offers information on psycho-oncological support, and an information letter addressed to their relatives. Further information about the PTGC can be found in Stracke et al [ 26 ].…”

Section: Methodsmentioning

confidence: 99%

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“You Always Have It in the Back of Your Mind”—Feelings, Coping, and Support Needs of Women with Pathogenic Variants in Moderate-Risk Genes for Hereditary Breast Cancer Attending Genetic Counseling in Germany: A Qualitative Interview Study

Stracke

Lemmen

Rhiem

et al. 2022

IJERPH

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Hereditary breast cancer accounts for approximately 30% of newly diagnosed breast cancer (BC) cases. Pathogenic variants in moderate-risk BC genes (MBCG) differ from those in high-risk genes in terms of associated cancer risks, affected organs, and available preventive options. Little is known about how MBCG pathogenic variant carriers who have attended post-test genetic counseling perceive their situation, how they cope with their situation, and which support needs they might have. Problem-centered, guided, individual interviews were conducted with twelve women carrying pathogenic variants in MBCG. The interview analysis was based on Mayring’s qualitative content analysis. The women were between 29 and 59 years old and carried pathogenic variants in the risk genes CHEK2 (n = 8), ATM (n = 1), or PALB2 (n = 3). Women reported a wide range of feelings, both positive (relief, calmness) and negative (overwhelm, fear, grief, guilt). All women applied strategies of emotion-focused coping to deal with this lifelong situation. Appraisal and evaluation of the affected mother’s coping might influence the patient’s own behavior and coping style. These results could be used during and after post-test genetic counseling to provide more needs-oriented counseling, and to help women in adjusting to and coping with being a pathogenic variant carrier.

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Section: Discussionsupporting

confidence: 76%

Section: Methodsmentioning

confidence: 99%

“You Always Have It in the Back of Your Mind”—Feelings, Coping, and Support Needs of Women with Pathogenic Variants in Moderate-Risk Genes for Hereditary Breast Cancer Attending Genetic Counseling in Germany: A Qualitative Interview Study

Stracke

Lemmen

Rhiem

et al. 2022

IJERPH

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“…Participants requested lectures on risk communication and preference‐sensitive decision‐making (Kautz‐Freimuth et al., 2022; Krassuski et al., 2021; Stracke et al., 2022). These clinical case presentations addressing contralateral BC risk and competing risk factors received very high ratings.…”

Section: Discussionmentioning

confidence: 99%

Implementing mainstream genetic counseling within the area‐wide network of the German Consortium Hereditary Breast and Ovarian Cancer (GC‐HBOC): Satisfaction of primary care providers with the provided state‐of‐the‐art training by the Cologne Center

Herold,

Bredow,

Ernst

et al. 2024

Journal of Genetic Counseling

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The German Cancer Society (Deutsche Krebsgesellschaft DKG) has published a position paper to address the challenges of cancer patient care in the era of genomic medicine. The German Consortium Hereditary Breast and Ovarian Cancer (GC‐HBOC) has implemented this recommendation in its care concept for families at risk. Core elements are the outcome‐oriented evaluation of structured and standardized clinical measures and reporting recommendations derived therefrom to primary care providers and patients. A cross‐sector network with certified breast cancer and gynecological cancer centers was founded in 2015, starting from the Cologne Center of the GC‐HBOC. To guarantee the knowledge transfer for mainstream genetic counseling, the Cologne center has established an educational program for physicians and specialized nurses in order to pilot trans‐sectoral knowledge transfer on risk assessment and risk‐stratified care. It consists of face‐to‐face lectures with written knowledge test, attending a genetic case conference and genetic counseling sessions with the opportunity to counsel under supervision. The lectures were accompanied by a structured evaluation of the participants' satisfaction and feedback of the needs in mainstream genetic counseling. Thereby, the network ensures that genetic counseling and testing is provided according to state‐of‐the‐art knowledge and allows physicians to participate in knowledge‐generating care outside the university setting and patients to receive care close to home. After multiple feedback cycles to improve the educational program, the GC‐HBOC, in cooperation with the German Cancer Society, has now adopted this concept and developed a common and uniform online curriculum funded by the Federal Ministry of Health. https://www.krebsgesellschaft.de/fortbildung‐familiaerer‐krebs.html.

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Living a Cancer Surveillance Life: A Meta‐Ethnographic Synthesis of Everyday Experiences and Ambivalences for Women Living With Hereditary Risk of Breast and/or Ovarian Cancer

Gislinge,

Byrjalsen,

Naver

et al. 2024

Psycho-Oncology

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ObjectiveWomen with or at risk of hereditary breast‐ and ovarian cancer (HBOC) often live a surveillance‐focused life from young adulthood. As they navigate a life of heightened medical vigilance, or a “cancer surveillance life,” we explore how women with HBOC, as well as their partners and families, experience this particular kind of living through a thorough literature review of existing qualitative research.MethodsWe performed Boolean searches in PubMed, EMBASE, EBSCOhost, PSYCHinfo, Scopus, and Web of Science from April–May 2022, identifying 506 relevant articles. After eliminating duplicates and quantitative studies, we systematically analyzed 53 articles. Articles examining all aspects of living with HBOC were eligible for inclusion. Following quality assessment by a verified appraisal tool, 28 articles were included in this review. We undertook an “a‐lines‐of‐argument synthesis,” and identified key similarities across studies to highlight generalizable aspects of living with HBOC.ResultsWe discovered five central themes which capture the ambivalences experienced by women living with HBOC: (1) an unresolved balancing act regarding genetic testing (2) burdens of relaying genetic information within the family (3) experienced risk discrepancies (4) preservation of the self and: (5) unsettled reproductive feelings.ConclusionsLiving with HBOC is filled with ambivalences, which are critical for decision making concerning disclosing risks to family members and children, choosing between risk‐reducing surgeries or surveillance, and family planning. Healthcare professionals should be aware of these findings when counseling women and families with HBOC to provide the best support possible in navigating their unique kind of living.

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Medical knowledge and information needs among women with pathogenic variants in moderate‐risk genes for hereditary breast cancer attending genetic counseling at an academic hospital in Germany—A qualitative approach

Abstract: This is an open access article under the terms of the Creat ive Commo ns Attri butio n-NonCo mmerc ial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

Cited by 8 publications

References 76 publications

“You Always Have It in the Back of Your Mind”—Feelings, Coping, and Support Needs of Women with Pathogenic Variants in Moderate-Risk Genes for Hereditary Breast Cancer Attending Genetic Counseling in Germany: A Qualitative Interview Study

“You Always Have It in the Back of Your Mind”—Feelings, Coping, and Support Needs of Women with Pathogenic Variants in Moderate-Risk Genes for Hereditary Breast Cancer Attending Genetic Counseling in Germany: A Qualitative Interview Study

Implementing mainstream genetic counseling within the area‐wide network of the German Consortium Hereditary Breast and Ovarian Cancer (GC‐HBOC): Satisfaction of primary care providers with the provided state‐of‐the‐art training by the Cologne Center

Living a Cancer Surveillance Life: A Meta‐Ethnographic Synthesis of Everyday Experiences and Ambivalences for Women Living With Hereditary Risk of Breast and/or Ovarian Cancer

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