Experiences of genetic counselors in referring young and metastatic breast cancer patients to support services: A needs assessment.

OBJECTIVE: Conduct a needs assessment to explore the experiences, barriers, and needs of genetic counselors (GCs), who counsel and refer young and metastatic breast cancer (BC) patients to support services, in order to develop resources to address any noticeable gaps. METHODS: GCs providing care to BC patients were eligible to complete the survey. Support services were defined as resources to address patient-centered healthcare, emotional, and quality-of-life needs. RESULTS: Most participants (n = 117) reported familiarity with cancer prevention services (93%); fewer were familiar with services secondary to a BC diagnosis (e.g., fatigue=16% and sexual health=24%). The volume of GCs indicating familiarity with support services increased significantly as work experience increased for seven services. Many (>50%) never referred patients to most (9/12) support services, excluding cancer prevention, mental health, and financial issues. Open-ended responses highlighted that GCs considered referrals to be outside their scope of practice or that healthcare systems prevent GCs from making referrals. CONCLUSION: GCs may benefit from curated resources and materials, especially for support services secondary to a BC diagnosis, to better support their patients. PRACTICAL IMPLICATIONS: Collaboration of GCs with other health professionals through integrative care programs may decrease burdens to accessing support services.

Factors that differentiate cancer risk management decisions among females with pathogenic/likely pathogenic variants in PALB2, CHEK2, and ATM.

PURPOSE: Following disclosure of pathogenic or likely pathogenic variants in hereditary cancer genes, patients face cancer risk management decisions. Through this mixed-methods study, we investigated cancer risk management decisions among females with pathogenic or likely pathogenic variants in PALB2, CHEK2, and ATM to understand why some patients follow National Comprehensive Cancer Network guidelines, whereas others do not. METHODS: Survey and interview data were cross-analyzed using a 3-stage approach. Identified factors were used to conduct coincidence analysis and differentiate between combinations of factors that result in following or not following guidelines. RESULTS: Of the 13 participants who underwent guideline inconsistent prophylactic surgery, 12 fit 1 of 3 unique patterns: (1) cancer-related anxiety in the absence of trust in care, (2) provider recommending surgery inconsistent with National Comprehensive Cancer Network guidelines, or (3) surgery occurring before genetic testing. Two unique patterns were found among 18 of 20 participants who followed guidelines: (1) anxiety along with trust in care or (2) lack of anxiety and no prophylactic surgery before testing. CONCLUSION: Health care provider recommendations and trust in care may influence whether individuals receive care that is congruent with risk levels conferred by specific genes. Interventions are needed to improve provider knowledge, patient trust in non-surgical care, and patient anxiety.

Developing theory-driven narrative messages with personal stories: A step-by-step guide.

OBJECTIVE: Narratives are commonly utilized in health promotion and behavior change interventions due to their efficacy over didactic or expository interventions. While grounding narratives in behavioral theory may render them more effective, balancing the integration of theoretical and creative aspects of the narrative development process while maintaining authenticity is challenging. Thus, this manuscript describes a rigorous process through which researchers can intentionally integrate theory and personal stories for health interventions. METHODS: The process for creating theory-driven narratives involves the following steps: (1) defining the purpose of the narratives, (2) selecting a guiding theory, (3) collecting personal testimonials, (4) immersing self into testimonials, (5) identifying central narratives and important variations, (6) considering additional theories, (7) piecing quotes into cohesive stories, (8) filling in the gaps, and (9) checking for resonance. RESULTS: To exemplify this step-by-step process, we provide a case study from our research involving the development of a psychoeducational intervention to model information seeking strategies for managing cancer-related uncertainty among women who have recently tested positive for pathogenic genetic variants that increase risk for hereditary breast and ovarian cancer. CONCLUSIONS: We discuss special considerations for developing theory-driven narrative interventions and reflect on how this rigorous step-by-step process can be adapted by other researchers.

Engaging Men With BRCA-Related Cancer Risks: Practical Advice for BRCA Risk Management From Male Stakeholders.

Men are at risk for developing hereditary cancers such as breast, prostate, pancreatic, and melanoma due to a pathogenic germline variant in either the BRCA1 or BRCA2 gene. The purpose of this study was to identify and provide practical advice for men managing their BRCA-related cancer risks based on men's real-life experiences. Semistructured interviews were conducted with 25 men who either tested positive for a pathogenic variant in BRCA1/2 gene or who had an immediate family member who had tested positive for a pathogenic variant in BRCA1/2. A thematic analysis of the interview transcripts was completed utilizing the constant comparison method. Qualitative analysis produced three categories of participant advice for men who recently learned of their hereditary cancer risk. Specifically, participants advised the following: (a) know the basics, (b) engage in the family narrative, and (c) advocate for yourself. Results showed the need for men to know and understand their BRCA cancer risks and communicate that genetic risk information to their family members and practitioners. In particular, the findings stress the importance of addressing men's risks and medical management from a family-focused approach. Overall, because men are historically undereducated about their BRCA-related cancer risks, this practical advice serves as a first step for men managing BRCA-related cancer risks and may ultimately assist them in making preventive and screening health behaviors.

"I've just never gotten around to doing it": Men's approaches to managing BRCA-related cancer risks.

OBJECTIVE: To examine men's approaches to managing BRCA-related cancer risks. METHODS: 25 Qualitative interviews were conducted with men who are at risk for BRCA-related cancers. Thematic analysis was conducted using the constant comparison. RESULTS: Qualitative analysis revealed two different approaches for how men managed their BRCA-related cancer risks. Men were engaged when: (1) initially seeking information, (2) uptake of genetic testing, and (3) population screening procedures. Men were passively avoidant for: (1) follow-up information seeking, (2) uptake of genetic testing, and (3) BRCA-specific screening. Men's justifications for engaged risk management were to: (1) protect their family, (2) respond to encouragement from others, and (3) get knowledge for themselves. Their justifications for passively avoidant management were due to: (1) limited access to clear risk information, (2) little fear of cancer development, (3) barriers to testing/screening, and (4) reliance on incomplete illness representations. CONCLUSIONS: Men at risk for developing BRCA-related cancers approached risk management by primarily using a passive avoidance approach. That approach should be interpreted in context with the inconsistent information available to them, and the minimal NCCN guidelines for their risk surveillance. PRACTICE IMPLICATIONS: Findings may assist healthcare providers and family members in helping men manage their BRCA-related cancer risks.