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Simple Summary: Increasing demand for genetic testing and counseling among families with hereditary cancers has drawn attention to the genetic skills and knowledge of healthcare professionals (HCPs). However, many HCPs face challenges regarding confidence in communicating genetic risk to their patients and accessing genetic training programs. Developing genomic educational strategies and standardizing the curriculum for HCPs is critical to improving genetic care. This systematic review identified the learning needs of HCPs and compared them across professions, along with their perspectives on essential information for families affected by hereditary cancer. While HCPs recognized the importance of providing a wide range of information to families affected by hereditary cancer and emphasized enhancing practical counseling skills, their learning needs varied by profession. Our findings have implications for developing training programs for HCPs, underscoring the importance of developing targeted training programs and resources aligned with their specific profession. Background: The increased demand for genetic testing and counseling necessitates healthcare professionals (HCPs) to improve their genetic competency through training programs. This systematic review identified HCPs' learning needs and their perspectives on essential information for families with hereditary cancer. Methods: This review covered studies published from 2013 to 2024 across five databases. Data were analyzed using a content analysis. Results: Thirteen studies involving 332 HCPs were analyzed. Most studies focused on the learning needs of physicians caring for families affected by Hereditary Breast and Ovarian Cancer in North America and Europe. HCPs required training emphasizing practical counseling skills over the basics of genetics. Learning needs varied by profession: physicians needed training in assessing cancer risk and supporting decision-making in risk management; nurses required information on resources and the genetic care system; genetic counselors sought guidance on family communication and planning. Essential information identified for families included risk-reducing strategies, personalized cancer risk assessment, family implications, psychological issues, (cascade) genetic testing, and social concerns. Conclusions: The findings have implications for the development of training programs for HCPs, emphasizing the need for tailored training based on professions. Future research should explore the needs of HCPs caring for families with diverse hereditary cancers and cultural backgrounds. [ABSTRACT FROM AUTHOR]

Objective: Women diagnosed with breast cancer younger than 45 years (young breast cancer survivors—YBCS) and their biological relatives face significant stressors. Although family support is an important coping resource, little is known about YBCS' and relatives' support and whether it is interdependent. The study described family support in YBCS and their biological relatives; identified demographic, clinical, and psychosocial predictors of support; and determined the interdependence of support in YBCS‐relatives family units. Methods: Data were collected from a random sample of YBCS and their first‐ or second‐degree female relatives. Actor‐partner interdependence models (APIM) explored predictors and interdependence of YBCS' and relatives' family support in dyads (YBCS and relative) and triads (YBCS and two relatives). Results: Among n = 310 YBCS and n = 431 first‐ or second‐degree relatives, family support was higher in triads compared to dyads. APIMs identified actor effects in dyads, and actor and partner effects in triads. Across all family units, YBCS' higher self‐efficacy was associated with higher YBCS support (actor effect) and relative support (partner effect); YBCS' prior diagnosis of depression was associated with lower YBCS and relative support (actor and partner effect); cost‐related lack of access to care was associated with lower support among YBCS (actor effect) and relatives (actor and partner effect). Conclusions: Family support was interdependent and was affected by self‐efficacy, depression, and access to care. Interventions should include YBCS and relatives, enhance self‐efficacy and access to care. Women diagnosed with breast cancer younger than 45 years old (young breast cancer survivors—YBCS) and their biological relatives face significant stressors. Data were collected from a random sample of YBCS, stratified by race, and their first‐ or second‐degree female relatives. Actor‐partner interdependence models explored predictors and interdependence of YBCS' and relatives' family support in dyads (YBCS‐one relative) and triads (YBCS‐two relatives). YBCS' and relatives' family support is interdependent. [ABSTRACT FROM AUTHOR]

Purpose The purpose of this article is to provide an overview of Family History in the Electronic Health Record and to identify opportunities to advance the contributions of nurses in obtaining, updating and assessing family history in order to improve the health of all individuals and populations. Organizing Construct The article presents an overview of the obstacles to charting Family History within the Electronic Health Record and recommendations for using specific Family History tools and core Family History data sets. Methods Opportunities to advance nursing contributions in obtaining, updating, and assessing family history in order to improve the health of all individuals were identified. These opportunities are focused within the area of promoting the importance of communication within families and between healthcare providers to obtain, document, and update family histories. Findings Nurses can increase awareness of existing resources that can guide collection of a comprehensive and accurate family history and facilitate family discussions. In this paper, opportunities to advance nursing contributions in obtaining, updating, and assessing family history in order to improve the health of all individuals were identified. Conclusions Aligned with the clinical preparation of nurses, family health should be used routinely by nurses for risk assessment and to help inform patient and family members on screening, health promotion, and disease prevention. The quality of family health information is critical in order to leverage the use of genomic healthcare information and derive new knowledge about disease biology, treatment efficacy, and drug safety. These actionable steps need to be performed in the context of promoting evidence-based applications of family history that will be essential for implementing personalized genomic healthcare approaches and disease prevention efforts. Clinical Relevance Family health history is one of the most important tools for identifying the risk of developing rare and chronic conditions, including cardiovascular disease, cancer, and diabetes, and represents an integration of disease risk from genetic, environmental, and behavioral/lifestyle factors. In fact, family history has long been recognized as a strong independent risk factor for disease and is the current best practice used in clinical practice to guide risk assessment. [ABSTRACT FROM AUTHOR]

Purpose This integrative review was conducted to examine factors that influence mammography screening and use of cancer genetic services among younger African American women at increased risk for developing breast cancer. Data sources Research articles were identified using PubMed, CINAHL, PsychINFO, and Cochrane library to find studies published from 2003 to 2013. Conclusions Findings from this review indicate that while younger African American women receive mammograms more often than the general population, they are not being referred for genetic testing when appropriate. This is a major concern because African American women tend to experience more aggressive forms of breast cancer at an earlier age than the general population; it is imperative that they undergo genetic testing for optimal management of their breast cancer risk. Implications for practice Nurse practitioners have a significant role in breast cancer screening and genetic testing of at-risk women, particularly in identifying and referring young women for testing. Further communication efforts are needed to improve young women's knowledge of breast cancer risk and the benefits of genetic testing. Reducing barriers to breast healthcare services requires nursing efforts that focus on populations at greatest risk for poor health outcomes. [ABSTRACT FROM AUTHOR]

Background Little is known about family members' interrelated decisions to seek genetic testing for breast cancer susceptibility. Methods The specific aims of this cross-sectional, descriptive, cohort study were (i) to examine whether individual and family characteristics have a direct effect on women's decisions to use genetic testing for hereditary susceptibility to breast cancer and (ii) to explore whether family characteristics moderate the relationships between individual characteristics and the decision to use genetic testing. Participants were women (>18 years old) who (i) received genetic testing for hereditary breast cancer and who agreed to invite one of their female relatives into the study and (ii) female relatives who had NOT obtained genetic testing and were identified by pedigree analysis as having >10% chances of hereditary susceptibility to breast cancer. Results The final sample consisted of 168 English-speaking, family dyads who completed self-administered, mailed surveys with validated instruments. Multivariate conditional logistic regression analyses showed that the proposed model explained 62% of the variance in genetic testing. The factors most significantly associated with genetic testing were having a personal history of cancer; perceiving genetic testing to have more benefits than barriers; having greater family hardiness; and perceiving fewer negative consequences associated with a breast cancer diagnosis. No significant interaction effects were observed. Conclusions Findings suggest that both individual and family characteristics are associated with the decision to obtain genetic testing for hereditary breast cancer; hence, there is a need for interventions that foster a supportive family environment for patients and their high-risk relatives. Copyright © 2012 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background: The Michigan Prevention Research Center, the University of Michigan Schools of Nursing, Public Health, and Medicine, and the Michigan Department of Community Health propose a multidisciplinary academicclinical practice three-year project to increase breast cancer screening among young breast cancer survivors and their cancer-free female relatives at greatest risk for breast cancer. Methods/design: The study has three specific aims: 1) Identify and survey 3,000 young breast cancer survivors (diagnosed at 20-45 years old) regarding their breast cancer screening utilization. 2) Identify and survey survivors' high-risk relatives regarding their breast cancer screening utilization. 3) Test two versions (Targeted vs. Enhanced Tailored) of an intervention to increase breast cancer screening among survivors and relatives. Following approval by human subjects review boards, 3,000 young breast cancer survivors will be identified through the Michigan Cancer Registry and mailed an invitation letter and a baseline survey. The baseline survey will obtain information on the survivors': a) current breast cancer screening status and use of genetic counseling; b) perceived barriers and facilitators to screening; c) family health history. Based on the family history information provided by survivors, we will identify up to two high-risk relatives per survivor. Young breast cancer survivors will be mailed consent forms and baseline surveys to distribute to their selected high-risk relatives. Relatives' baseline survey will obtain information on their: a) current breast cancer screening status and use of genetic counseling; and b) perceived barriers and facilitators to screening. Young breast cancer survivors and high-risk relatives will be randomized as a family unit to receive two versions of an intervention aiming to increase breast cancer screening and use of cancer genetic services. A follow-up survey will be mailed 9 months after the intervention to survivors and high-risk relatives to evaluate the efficacy of each intervention version on: a) use of breast cancer screening and genetic counseling; b) perceived barriers and facilitators to screening; c) self-efficacy in utilizing cancer genetic and screening services; d) family support related to screening; e) knowledge of breast cancer genetics; and f) satisfaction with the intervention. Discussion: The study will enhance efforts of the state of Michigan surrounding cancer prevention, control, and public health genomics. [ABSTRACT FROM AUTHOR]

Purpose/Objectives: To (a) examine differences in appraisals of hereditary breast and ovarian cancer (HBOC), psychological distress, family environment, and decisional conflict between women who pursued genetic testing and their at-risk relatives who did not, and (b) examine correlations among appraisals of HBOC, psychological distress, family environment, and decisional conflict regarding genetic testing in these two cohorts of women.Design: Descriptive, cross-sectional cohort study.Setting: Two clinics affiliated with a major research university in the midwestern United States.Sample: 372 women aged 18 years and older. 200 pursued genetic testing for BRCA1 and BRCA2 mutations (probands) and 172 of their female relatives who had a greater than 10% prior probability of being a mutation carrier but had not pursued testing.Methods: After providing informed consent, probands and relatives were mailed self-administered questionnaires.Main Research Variables: Perceived risk, knowledge of HBOC risk factors and modes of gene inheritance, perceived severity, perceived controllability, psychological distress, family relationships, family communication, and decisional conflict about genetic testing.Findings: T tests revealed that probands perceived higher risk and had more psychological distress associated with breast cancer. Probands had more knowledge regarding risk factors and gene inheritance, and greater decisional conflict regarding genetic testing. Relatives reported higher perceived severity and controllability. No differences were observed in family relationships and family communication between probands and relatives. Pearson correlations revealed different patterns in knowledge, perceived controllability, family relationships, and decisional conflict between probands and relatives.Conclusions: Significant differences exist between women who pursue genetic testing and those who do not. The family environment influences adjustment to HBOC and decisions about genetic testing.Implications for Nursing: Enhancing the family communication process about HBOC can provide informational and emotional support to high-risk women and promote decision making about genetic testing. [ABSTRACT FROM AUTHOR]

Purpose: To examine whether and how distrust of the health system and predisposition to use healthcare services influence frequency of mammograms and Clinical Breast Exams (CBEs). Methods: A community-based survey recruited 184 women (age 47±12); 49% were college-educated, 77% had health insurance, and 57% were non-white. Distrust was measured with a four-item scale (Cronbach α =0.71); predisposition to use health services with an 11-item scale (Cronbach α =0.84). Ordinal regression analysis was used to test two models examining “time since last mammogram” and “time since last CBE.” The later model had a better goodness-of-fit, as indicated by a non-significant, Pearson coefficient. Findings: Distrust to the health system was significantly correlated with age (r =−0.19*), income (r =−0.16*), and predisposition to use health services (r =−0.26**). Distrust predicted time since last CBE (B: 0.37, SE: 0.19*), which in turn was significantly correlated with time since last mammogram (r =0.44**). Predisposition to use health services predicted time since last CBE (B: −0.78, SE: 0.19**) and time since last mammogram (B: −0.47, SE: 0.22**). Insurance predicted time since last CBE (B: −0.94, SE: 0.44*), while age (B: −0.21, SE: 0.03**) and income (B: −0.19, SE: 0.09*) predicted time since last mammogram. Conclusion: Distrust of the healthcare system and predisposition to use health services influence breast cancer screening directly. Distrust interferes with behavioral patterns that favor recurrent breast cancer screening. Practice implications: Trustworthiness in the healthcare system and positive attitudes for the use of, health services enhance routine breast cancer screening. *p <0.05, **p <0.001. [Copyright &y& Elsevier]

Purpose/Objectives: To describe perceived breast cancer risk, identify the percentage of women with inaccurate risk perceptions, and examine the influence of perceived and objective risk on screening behavior.Design: Descriptive, correlational, cross-sectional.Setting: Community settings in a metropolitan area on the western coast of the United States.Sample: Multicultural sample of 184 English-speaking women (57% non-Caucasian, X age = 47 ± 12 years) who have never been diagnosed with cancer.Methods: Two perceived risk scales (verbal and comparative) and the Gail model were used to assess perceived and objective breast cancer risk, respectively.Main Research Variables: Perceived breast cancer risk, objective breast cancer risk, screening behavior.Findings: Participants reported that they "probably will not" get breast cancer and that their risk was "somewhat lower" than average. Family history of breast cancer was a significant predictor of perceived risk. Demographic characteristics and objective risk factors were not associated with perceived risk. Most women at high risk for breast cancer (89%) underestimated their actual risk; fewer women with low to average risk for breast cancer (9%) overestimated their risk. Age, Gail scores, and health insurance status promoted breast cancer screening; underestimation of risk had the opposite effect.Conclusions: Inaccurate perceptions of risk do not promote optimal breast cancer screening. The finding has implications for most women at high risk for developing breast cancer who underestimate their risk.Implications for Nursing: Oncology nurses can use risk assessment tools to provide individualized counseling regarding breast cancer risk factors and screening. Women at high risk who underestimate their risk could benefit from additional screening and from advances in cancer chemoprevention. [ABSTRACT FROM AUTHOR]

Purpose/Objectives: To describe knowledge of hereditary, familial, and sporadic breast cancer risk factors among women in the community and to identify characteristics associated with this knowledge. Design: Descriptive, cross-sectional. Setting: Community settings in the San Francisco Bay Area. Sample: 184 women who had never been diagnosed with cancer, were 30-85 years old (-X = 47 ± 12), and agreed to complete a questionnaire in English. Participants were from diverse racial and cultural backgrounds (i.e., 43% European descent, 27% African descent, 16% Asian descent, and 14% Hispanic descent). Many (49%) were college graduates, and 24% had a median annual family income of $30,000-$50,000. Methods: Survey. Main Research Variables: Knowledge of hereditary, familial, and sporadic breast cancer risk factors and characteristics associated with this knowledge. Findings: Although most women recognized heredity as a risk factor, some did not understand the impact of paternal family history on risk. Some women did not recognize the relationship between breast and ovarian cancer, risk factors associated with the Gail model, and that aging increases risk. Education level was the most important characteristic associated with knowledge of risk factors. Conclusions: Although age and family history are independent predictors of sporadic, hereditary, and familial breast cancer risk, women in the community could not distinguish between the three forms of the disease. Although the sample included a large number of educated women, their knowledge of breast cancer risk factors appeared incomplete. Implications for Nursing: Advanced practice nurses should provide individualized risk assessment and education regarding breast cancer risk factors. [ABSTRACT FROM AUTHOR]

Studies suggest that people construct their risk perceptions by using inferential rules called heuristics. The purpose of this study was to identify heuristics that influence perceived breast cancer risk. We examined 11 interviews from women of diverse ethnic/cultural backgrounds who were recruited from community settings. Narratives in which women elaborated about their own breast cancer risk were analyzed with Argument and Heuristic Reasoning Analysis methodology, which is based on applied logic. The availability, simulation, representativeness, affect, and perceived control heuristics, and search for a dominance structure were commonly used for making risk assessments. Risk assessments were based on experiences with an abnormal breast symptom, experiences with affected family members and friends, beliefs about living a healthy lifestyle, and trust in health providers. Assessment of the potential threat of a breast symptom was facilitated by the search for a dominance structure. Experiences with family members and friends were incorporated into risk assessments through the availability, simulation, representativeness, and affect heuristics. Mistrust in health providers led to an inappropriate dependence on the perceived control heuristic. Identified heuristics appear to create predictable biases and suggest that perceived breast cancer risk is based on common cognitive patterns. [Copyright &y& Elsevier]

Background. Perceived risk is a principal variable in theoretical models that attempt to predict the adoption of health-protective behaviors.Methods. This meta-analysis synthesizes findings from 42 studies, identified in PubMed and PsycInfo from 1985 onward. Studies examined demographic and psychological variables as predictors of perceived breast cancer risk and the relationship between perceived risk and breast cancer screening. Statistical relationships, weighted for sample size, were transformed to effect sizes and 95% CIs.Results. Women do not have accurate perceptions of their breast cancer risk (N = 5,561, g = 1.10). Overall, they have an optimistic bias about their personal risk (g = 0.99). However, having a positive family history (N = 70,660, g = 0.88), recruitment site, and measurement error confounded these results. Perceived risk is weakly influenced by age (N = 38,000, g = 0.13) and education (N = 1,979, g = 0.16), and is moderately affected by race/culture (N = 2,192, g = 0.38) and worry (N = 6,090, g = 0.49). There is an association between perceived risk and mammography screening (N = 52,766, g = 0.19). It is not clear whether perceived risk influences adherence to breast self-examination. Women who perceived a higher breast cancer risk were more likely to pursue genetic testing or undergo prophylactic mastectomy.Conclusion. Perceived breast cancer risk depends on psychological and cognitive variables and influences adherence to mammography screening guidelines. [Copyright &y& Elsevier]

Purpose/Objectives: To examine the relationship between women's reported social support and their adherence to recommended breast cancer screening guidelines. Design: Descriptive, cross-sectional survey. Setting: Community women's organizations throughout the San Francisco Bay Area. Sample: 833 mostly low-income women with a mean age of 46.2 years from three racial or ethnic groups (i.e., Latina, Caucasian, and African American) who were not breast cancer survivors. Methods: Social support was measured with a five-item, four-point, Likert scale developed for the study (Cronbach's alpha = 0.7248). Adherence to screening guidelines was measured by asking frequency of performing breast self-examination (BSE) and frequency of obtaining a clinical breast examination (CBE) and a mammogram. Research assistants and leaders of women's organizations conducted the survey in work and community settings. Main Research Variables: Social support, performance of BSE, obtaining a CBE and a mammogram, income, education, spoken language, and level of acculturation. Findings: Higher levels of social support were related to higher income and higher education. Lower levels of social support were associated with being Latina, completing the survey in Spanish, and being born abroad. Women who did not adhere to screening guidelines (for BSE or CBE) reported less social support. Conclusions: Social support is associated with adherence to breast cancer screening guidelines. Implications for Nursing: Nurses should assess women's levels of social support as a factor when evaluating adherence to breast cancer screening guidelines. [ABSTRACT FROM AUTHOR]

Simple Summary: Identifying breast cancer patients with pathogenic mutations that run in their families may improve the follow-up care they receive and breast cancer screening of their close relatives. In this study we identified breast cancer patients with high chances of having a pathogenic mutation and their close female relatives. We developed and tested two different kinds of letters and booklets that presented either personalized or generic information about screening and breast cancer that runs in families, and we encouraged participants to seek genetic evaluation. We found that both types of letters worked equally well for breast cancer patients and for relatives, regardless of their racial background. The personalized letters had slightly better outcomes. Some breast cancer patients and their relatives used genetic services and improved their screening practices. Black patients and their relatives were more satisfied with the booklets than other participants. We compared a tailored and a targeted intervention designed to increase genetic testing, clinical breast exam (CBE), and mammography in young breast cancer survivors (YBCS) (diagnosed <45 years old) and their blood relatives. A two-arm cluster randomized trial recruited a random sample of YBCS from the Michigan cancer registry and up to two of their blood relatives. Participants were stratified according to race and randomly assigned as family units to the tailored (n = 637) or the targeted (n = 595) intervention. Approximately 40% of participants were Black. Based on intention-to-treat analyses, YBCS in the tailored arm reported higher self-efficacy for genetic services (p = 0.0205) at 8-months follow-up. Genetic testing increased approximately 5% for YBCS in the tailored and the targeted arm (p ≤ 0.001; p < 0.001) and for Black and White/Other YBCS (p < 0.001; p < 0.001). CBEs and mammograms increased significantly in both arms, 5% for YBCS and 10% for relatives and were similar for Blacks and White/Others. YBCS and relatives needing less support from providers reported significantly higher self-efficacy and intention for genetic testing and surveillance. Black participants reported significantly higher satisfaction and acceptability. Effects of these two low-resource interventions were comparable to previous studies. Materials are suitable for Black women at risk for hereditary breast/ovarian cancer (HBOC). [ABSTRACT FROM AUTHOR]

BRCA1/2 genetic testing offers tremendous opportunities for prevention, diagnosis and treatment of breast and ovarian cancer. Women acquire valuable information that can help them to make informed decisions about their health. However, knowing one's susceptibility to developing cancer may be burdensome for several women, as this risk needs to be managed over time through a continuous dialogue with multiple healthcare professionals. We explored how communication between physicians and unaffected women carrying BRCA1/2 germline pathogenic variants was experienced by women in relation to their genetic risk. Data came from qualitative interviews conducted in Switzerland with 32 unaffected women carrying BRCA1/2 pathogenic variants and aware of their genetic status for at least 3 years. We identified three different types of message as conveyed by physicians to women: (1) a normative message, (2) an over-empowering message, and (3) a minimizing message. On one hand, we found that women are exposed to contradictory messages, often simultaneously, in their interactions with healthcare professionals during their post-genetic testing journey. On the other hand, women's reports highlighted the absence of shared decision-making in such interactions. The combination of these two findings resulted in a strong sense of disorientation, frustration, and powerlessness among participants. Healthcare professionals interacting with high cancer risk women are urged to align in favor of a both concerted and shared decision-making approach when discussing options for managing genetic risk. [ABSTRACT FROM AUTHOR]

Simple Summary: The study adapted an existing Web-based intervention, the Family Gene Toolkit, for Swiss and Korean families that harbor the genetic changes associated with hereditary breast and ovarian cancer syndrome. The Family Gene Toolkit encourages family communication of genetic testing results and cascade genetic testing among at-risk relatives. Feedback from 68 women with genetic changes and 31 clinicians informed the culturally sensitive adaptation of the content. The Information Technology team developed the web application that will host the intervention. Finally, a new sample of 18 women from families with hereditary breast and ovarian cancer reviewed and evaluated the adapted content and the functions of the web application. Findings support that overall, the adapted Family Gene Toolkit is well-designed, has useful information for these families, and provides interactive content and illustrative stories. The research team will test if it can increase rates of cascade testing among at-risk relatives in a subsequent randomized trial. The study adapted the Family Gene Toolkit and developed a customized web application for Swiss and Korean families harboring BRCA1 or BRCA2 pathogenic variants to support family communication of genetic testing results and promote cascade genetic testing among at-risk relatives. In the first step, narrative data from 68 women with BRCA1/BRCA2 pathogenic variants and clinician feedback informed a culturally sensitive adaptation of the content consistent with current risk management guidelines. In the second step, the Information Technology team developed the functions and the interface of the web application that will host the intervention. In the third step, a new sample of 18 women from families harboring BRCA1/BRCA2 pathogenic variants tested the acceptability and usability of the intervention using "think-aloud" interviews and a questionnaire. Participants expressed high levels of satisfaction with the intervention. They provided positive feedback for the information regarding active coping, strategies to enhance family communication, interactive elements, and illustrative stories. They reported that the information was useful and the web application was easy to navigate. Findings suggest that the Family Gene Toolkit is well-designed and can increase rates of cascade testing among at-risk relatives. Its efficacy will be tested in a subsequent randomized trial. [ABSTRACT FROM AUTHOR]

Background: Approximately 40 million people in need of palliative care worldwide, while 80% of them live in low- and middle-income countries. Kazakhstan, a low-to middleincome country with a reforming healthcare system, is committed to improving quality and accessibility of care for its 100,000 terminal patients in need of palliative care. Policy Options and Recommendations: To join the group of countries where palliative care is available, accessible, and affordable, Kazakhstan must integrate palliative services into the mainstream healthcare system at all levels, from primary healthcare to hospices, and from major cities to remote villages. Based on the evidence thoroughly collected directly from the Ministry of Health, authors propose a feasible set of recommendations regarding palliative policy, pain relief, infrastructure, workforce, and education, which could be implemented in LMICs beyond Kazakhstan. Conclusion: This study presents an analysis of challenges, recent developments, and needs of palliative care in Kazakhstan, including funding, policy, workforce, education, and infrastructure, providing an evidence base and recommendations for future development of palliative care in Kazakhstan and in other LMICs. [ABSTRACT FROM AUTHOR]

Objective: Fear of cancer recurrence, although distinct from distress continues to be under-evaluated, captured, or treated when standard distress scales are used to assess concerns of cancer survivors. We tested a model assessing the association of demographic and clinical factors, illness representations, and perceived risk with fear of cancer recurrence in breast cancer survivors.Methods: We recruited 117 breast cancer survivors at least one year after completing breast cancer treatment from Internet discussion boards for this cross-sectional, descriptive, correlational study. Participants completed a survey that assessed their level of fear of cancer recurrence as well as their illness representations, perceived risk of recurrence, and demographic and medical characteristics.Results: Our model explained 62% of the variance in fear of cancer recurrence. Emotional representations (β = .46, p < .01), symptom attribution (β = .21, p < .01), timeline (β = .23, p < .01), and consequences (β = .16, p < .03) were significantly related to fear of recurrence. By contrast, the majority of clinical and demographic variables were not significant contributors to fear of recurrence.Conclusions: Upon completion of cancer treatment, survivors with more emotional representations of the experience and those who attribute unrelated symptoms to their breast cancer have a higher level of fear of recurrence. Evaluation of these factors during treatment may help mitigate fear of recurrence in the survivorship phase of the breast cancer trajectory. Copyright © 2016 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background: The Michigan Prevention Research Center, the University of Michigan Schools of Nursing, Public Health, and Medicine, and the Michigan Department of Community Health propose a multidisciplinary academic-clinical practice three-year project to increase breast cancer screening among young breast cancer survivors and their cancer-free female relatives at greatest risk for breast cancer.Methods/design: The study has three specific aims: 1) Identify and survey 3,000 young breast cancer survivors (diagnosed at 20-45 years old) regarding their breast cancer screening utilization. 2) Identify and survey survivors' high-risk relatives regarding their breast cancer screening utilization. 3) Test two versions (Targeted vs. Enhanced Tailored) of an intervention to increase breast cancer screening among survivors and relatives. Following approval by human subjects review boards, 3,000 young breast cancer survivors will be identified through the Michigan Cancer Registry and mailed an invitation letter and a baseline survey. The baseline survey will obtain information on the survivors': a) current breast cancer screening status and use of genetic counseling; b) perceived barriers and facilitators to screening; c) family health history. Based on the family history information provided by survivors, we will identify up to two high-risk relatives per survivor. Young breast cancer survivors will be mailed consent forms and baseline surveys to distribute to their selected high-risk relatives. Relatives' baseline survey will obtain information on their: a) current breast cancer screening status and use of genetic counseling; and b) perceived barriers and facilitators to screening. Young breast cancer survivors and high-risk relatives will be randomized as a family unit to receive two versions of an intervention aiming to increase breast cancer screening and use of cancer genetic services. A follow-up survey will be mailed 9 months after the intervention to survivors and high-risk relatives to evaluate the efficacy of each intervention version on: a) use of breast cancer screening and genetic counseling; b) perceived barriers and facilitators to screening; c) self-efficacy in utilizing cancer genetic and screening services; d) family support related to screening; e) knowledge of breast cancer genetics; and f) satisfaction with the intervention.Discussion: The study will enhance efforts of the state of Michigan surrounding cancer prevention, control, and public health genomics. [ABSTRACT FROM AUTHOR]

Cascade genetic testing of relatives from families with pathogenic variants associated with hereditary breast and ovarian cancer (HBOC) or Lynch syndrome (LS) has important implications for cancer prevention. We compared the characteristics of relatives from HBOC or LS families who did not have genetic testing (GT (−) group) with those who had genetic testing (GT (+) group), regardless of the outcome. Self-administered surveys collected cross-sectional data between September 2017 and December 2021 from relatives participating in the CASCADE cohort. We used multivariable logistic regression with LASSO variable selection. Among n = 115 relatives who completed the baseline survey, 38% (n = 44) were in the GT (−) group. Being male (OR: 2.79, 95% CI: 1.10–7.10) and without a previous cancer diagnosis (OR: 4.47, 95% CI: 1.03–19.42) increased the odds of being untested by almost three times. Individuals from families with fewer tested relatives had 29% higher odds of being untested (OR: 0.71, 95% CI: 0.55–0.92). Reasons for forgoing cascade testing were: lack of provider recommendation, lack of time and interest in testing, being afraid of discrimination, and high out-of-pocket costs. Multilevel interventions designed to increase awareness about clinical implications of HBOC and LS in males, referrals from non-specialists, and support for testing multiple family members could improve the uptake of cascade testing. [ABSTRACT FROM AUTHOR]

Low uptake of genetic services among members of families with hereditary breast and ovarian cancer (HBOC) suggests limitations of proband-mediated communication of genetic risk. This study explored how genetic information proceeds from healthcare providers to probands and from probands to relatives, from the probands' perspectives. Using a grounded-theory approach, we analyzed narrative data collected with individual interviews and focus groups from a sample of 48 women identified as carriers of HBOC-associated pathogenic variants from three linguistic regions of Switzerland. The findings describe the "communication chain", confirming the difficulties of proband-mediated communication. Provider–proband communication is impacted by a three-level complexity in the way information about family communication is approached by providers, received by probands, and followed-up by the healthcare system. Probands' decisions regarding disclosure of genetic risk are governed by dynamic and often contradictory logics of action, interconnected with individual and family characteristics, eventually compelling probands to engage in an arbitrating process. The findings highlight the relevance of probands' involvement in the communication of genetic risk to relatives, suggesting the need to support them in navigating the complexity of family communication rather than replacing them in this process. Concrete actions at the clinical and health system levels are needed to improve proband-mediated communication. [ABSTRACT FROM AUTHOR]

Simple Summary: One in three patients with breast cancer report cancer-related cognitive impairment (CRCI) even before treatment. CRCI can persist and negatively impact patients' quality of life. We used a self-report measure to assess CRCI. We assessed patients' ability to plan and solve everyday life problems, concentrate, and have meaningful relationships with others. We evaluated subgroups of patients with different profiles regarding these abilities and whether they had different demographic and clinical characteristics. Our analyses showed that 64.2%, 43.3%, and 40.1% of the patients had clinically meaningful decrements in their abilities to plan and problem-solve, concentrate, and have meaningful relationships with others, respectively, from prior to through to 6 months after surgery. Pre-surgery symptoms (i.e., anxiety, depression, fatigue, sleep disturbance) and other characteristics (e.g., lower functional status, higher comorbidity) were associated with worse CRCI profiles and may be potential targets for personalized interventions. Cancer related cognitive impairment (CRCI) is a common and persistent symptom in breast cancer patients. The Attentional Function Index (AFI) is a self-report measure that assesses CRCI. AFI includes three subscales, namely effective action, attentional lapses, and interpersonal effectiveness, that are based on working memory, inhibitory control, and cognitive flexibility. Previously, we identified three classes of patients with distinct CRCI profiles using the AFI total scores. The purpose of this study was to expand our previous work using latent class growth analysis (LCGA), to identify distinct cognitive profiles for each of the AFI subscales in the same sample (i.e., 397 women who were assessed seven times from prior to through to 6 months following breast cancer surgery). For each subscale, parametric and non-parametric statistics were used to determine differences in demographic, clinical, and pre-surgical psychological and physical symptoms among the subgroups. Three-, four-, and two-classes were identified for the effective action, attentional lapses, and interpersonal effectiveness subscales, respectively. Across all three subscales, lower functional status, higher levels of anxiety, depression, fatigue, and sleep disturbance, and worse decrements in energy were associated with worse cognitive performance. These and other modifiable characteristics may be potential targets for personalized interventions for CRCI. [ABSTRACT FROM AUTHOR]

Aims. To review evidence on the role of oncology nurses in the provision of information to cancer patients and to delineate evidence-based implications for clinical practice and research. Background. Provision of information is central for the empowerment of patients to participate in their care. There is not enough evidence regarding the nursing role in the information delivery process in cancer patients. Design. Descriptive literature review. Methods. From January 1990–2008, databases searched included Medline, CINAHL, PubMed, CancerLit and the Cochrane Library. Original research articles addressing the role of nurses in information delivery were included. We explored evidence on: (1) the effectiveness of nurses as information providers, (2) the way patients evaluate nurses’ input to information delivery, (3) the extent to which nurses contribute to information delivery to cancer patients and (4) the types of information provided by nurses. Results. The most important findings were: (1) nurses’ role as information providers for cancer patients is prominent, especially after the initiation of treatment, (2) specialist nurses are very effective in providing information, (3) no clear evidence exists on how nurses compare with other health-care professionals as information providers and (4) some evidence exists that patients may prefer nurses as information providers at specific times in their treatment and especially in regards to symptom management. Conclusion. Well-designed studies provide some evidence that nurses are effective as information providers to cancer patients. Specifically, oncology nurses are able to provide information of both high quality and of appropriate quantity and to assist individuals to interpret information provided by others. Relevance to clinical practice. Oncology nurses should be specifically educated and prepared to offer explicit, practical and timely information and they should be trained in interpersonal communication skills, which will increase their ability to comprehend patient information needs. [ABSTRACT FROM AUTHOR]

Simple Summary: This paper presents important information for the implementation of cascade screening programs for hereditary breast and ovarian cancer (HBOC) and Lynch syndrome (LS). The study examined theory-based predictors of index cases' intention to invite relatives to a family-based cohort, rates of cascade testing among relatives, and preferences of those who carry a pathogenic variant for patient- or provider-mediated communication of testing results to untested relatives. While index cases are equally likely to invite relatives of both genders, males are more likely to not respond to the invitation, especially for HBOC. Findings have implications for tailoring cascade screening programs. Cascade screening for Tier 1 cancer genetic conditions is a significant public health intervention because it identifies untested relatives of individuals known to carry pathogenic variants associated with hereditary breast and ovarian cancer (HBOC) and Lynch syndrome (LS). The Swiss CASCADE is a family-based, open-ended cohort, including carriers of HBOC- and LS-associated pathogenic variants and their relatives. This paper describes rates of cascade screening in relatives from HBOC- and LS- harboring families, examines carriers' preferences for communication of testing results, and describes theory-based predictors of intention to invite relatives to a cascade screening program. Information has been provided by 304 index cases and 115 relatives recruited from September 2017 to December 2021. On average, 10 relatives per index case were potentially eligible for cascade screening. Approximately 65% of respondents wanted to invite relatives to the cohort, and approximately 50% indicated a preference for patient-mediated communication of testing results, possibly with the assistance of digital technology. Intention to invite relatives was higher for first- compared to second- and third-degree relatives, but was not different between syndromes or based on relatives' gender. The family environment and carrying pathogenic variants predicts intention to invite relatives. Information helps optimize delivery of tailored genetic services. [ABSTRACT FROM AUTHOR]

We examined how responsibility (the "duty to inform relatives about genetic testing results") is understood and enacted among Swiss and Korean women carrying BRCA1 or BRCA2 pathogenic variants. In-depth interviews and/or focus groups with 46 Swiss and 22 Korean carriers were conducted, using an identical interview guide. Data were analyzed inductively and translated into English for cross-country comparisons. We identified five modes of responsibility in both samples: Persuader, Enabler, Relayer, Delayer, and Decliner. The Enabler and Relayer modes were the most common in both countries. They followed the rational imperative of health and norms of competence and self-determination, respectively. The Relayer mode transmitted information without trying to influence relatives' decisions. The Delayer and Decliner modes withheld information, deeming it the best way to safeguard the family during that specific moment of its trajectory. Responsibility to disclose testing results was influenced by culturally diverging conceptions of the family unit and socio-contextual norms. Responsibility primarily reflects the imperative of health prevention; findings demonstrate various interpretations, including the sense of family caring achieved through controlled disclosure of genetic information. Findings offer healthcare providers socio-anthropological insights to assist probands navigate the disclosure of genetic information within their families. NCT 04214210 (registered Nov 2, 2020), KCT 0005643 (registered Nov 23, 2020) • There are five modes of responsibility in telling family of cancer genetic results. • The duty to warn family of hereditary cancer is guided by multi-layered reasoning. • Life transitions and family protection may justify communication delays. • Recognizing social and cultural factors aids in supporting family communication. [ABSTRACT FROM AUTHOR]

Background: The clinical utility of machine-learning (ML) algorithms for breast cancer risk prediction and screening practices is unknown. We compared classification of lifetime breast cancer risk based on ML and the BOADICEA model. We explored the differences in risk classification and their clinical impact on screening practices.Methods: We used three different ML algorithms and the BOADICEA model to estimate lifetime breast cancer risk in a sample of 112,587 individuals from 2481 families from the Oncogenetic Unit, Geneva University Hospitals. Performance of algorithms was evaluated using the area under the receiver operating characteristic (AU-ROC) curve. Risk reclassification was compared for 36,146 breast cancer-free women of ages 20-80. The impact on recommendations for mammography surveillance was based on the Swiss Surveillance Protocol.Results: The predictive accuracy of ML-based algorithms (0.843 ≤ AU-ROC ≤ 0.889) was superior to BOADICEA (AU-ROC = 0.639) and reclassified 35.3% of women in different risk categories. The largest reclassification (20.8%) was observed in women characterised as 'near population' risk by BOADICEA. Reclassification had the largest impact on screening practices of women younger than 50.Conclusion: ML-based reclassification of lifetime breast cancer risk occurred in approximately one in three women. Reclassification is important for younger women because it impacts clinical decision- making for the initiation of screening. [ABSTRACT FROM AUTHOR]

Context: Although approximately 75% of patients with breast cancer report changes in attentional function, little is known about how demographic, clinical, symptom, and psychosocial adjustment (e.g., coping) characteristics influence changes in the trajectories of attentional function over time.Objectives: This study evaluated interindividual variability in the trajectories of self-reported attentional function and determined which demographic, clinical, symptom, and psychosocial adjustment characteristics were associated with initial levels and with changes in attentional function from before through 12 months after breast cancer surgery.Methods: Before surgery, 396 women were enrolled. Attentional Function Index (AFI) was completed before and nine times within the first 12 months after surgery. Hierarchical linear modeling was used to determine which characteristics were associated with initial levels and trajectories of attentional function.Results: Given an estimated preoperative AFI score of 6.53, for each additional month, the estimated linear rate of change in AFI score was an increase of 0.054 (P < 0.001). Higher levels of comorbidity, receipt of adjuvant chemotherapy, higher levels of trait anxiety, fatigue, and sleep disturbance, and lower levels of energy and less sense of control were associated with lower levels of attentional function before surgery. Patients who had less improvements in attentional function over time were nonwhite, did not have a lymph node biopsy, had received hormonal therapy, and had less difficulty coping with their disease.Conclusion: Findings can be used to identify patients with breast cancer at higher risk for impaired self-reported cognitive function and to guide the prescription of more personalized interventions. [ABSTRACT FROM AUTHOR]

Introduction: African-American women have higher rates of early-onset breast cancer compared with their Caucasian counterparts; yet, when diagnosed with breast cancer at a young age, they underuse genetic counseling and testing to manage their risk of developing future cancers.Methods: Self-reported baseline data were collected between September 2012 and January 2013 and analyzed in 2014 from a subpopulation of 340 African-American young breast cancer survivors (YBCSs) enrolled in an RCT. YBCSs were diagnosed with invasive breast cancer or ductal carcinoma in situ between ages 20 and 45 years and were randomly selected from a statewide cancer registry. Logistic regression examined predictors of using cancer genetics services.Results: Overall, 28% of the sample reported having genetic counseling and 21% reported having genetic testing, which were significantly lower (p≤0.005) compared with white/other YBCSs participating in the parent study. In a multivariate analysis, income was positively associated with counseling (B=0.254, p≤0.01) and testing (B=0.297, p≤0.01), whereas higher education levels (B=-0.328, p≤0.05) and lack of access to healthcare services owing to cost (B=-1.10, p≤0.03) were negatively associated with genetic counseling. Lower income and lack of care because of high out-of-pocket costs were commonly reported barriers.Conclusions: Despite national recommendations for genetic evaluation among women with early-onset breast cancer, few African-American YBCSs reported undergoing genetic counseling and testing. Most reported that their healthcare provider did not recommend these services. Interventions addressing patient, provider, and structural healthcare system barriers to using genetic counseling and testing in this population are needed. [ABSTRACT FROM AUTHOR]

Purpose/Objectives: To examine family caregivers' experience of mental fatigue, identify strategies they use to manage it, and ascertain the kind of help they would like from healthcare professionals. Research Approach: Descriptive, qualitative study that was part of a larger mixed-methods study. Setting: Metropolitan comprehensive cancer center in the midwestern United States. Participants: 79 family caregivers of patients with advanced cancer who were participating in phase I clinical trials. Methodologic Approach: Caregivers completed a semistructured, open-ended questionnaire and demographic and health history forms. Findings: Caregivers were able to define mental fatigue and give many examples of it. They reported that mental fatigue did not interfere with patient care, but that it did have a negative effect on their own self-care. They identified strategies to manage mental fatigue. They wanted more information and support from professionals. Conclusions: The majority of caregivers experienced mental fatigue, which manifested as trouble concentrating, difficulty remembering things, and irritability. The majority worked outside of the home and had health problems of their own. Interpretation: Healthcare professionals need to assess caregivers for mental fatigue and find ways to help them reduce mental fatigue and restore their attention. Nurses are in a prime position to mobilize resources for caregivers to effectively manage burden and reduce mental fatigue. [ABSTRACT FROM AUTHOR]

Simple Summary: This cross-study comparison uses data collected over 10 years from families living in the US and in Switzerland in order to compare genetic literacy between individuals who had genetic counselling for hereditary breast/ovarian cancer (HBOC) and one or more of their relatives who did not, and examines factors influencing genetic literacy both at the individual and at the family level. The study identifies genetic risk factors and signs of HBOC that remain unclear, even to individuals who had genetic consultation, and highlights the gaps in the dissemination of genetic information. Sensitivity analysis examines the dissemination of genetic information from the individual who had counselling to relatives within the same family that did not. Examining genetic literacy in families concerned with hereditary breast and ovarian cancer (HBOC) helps understand how genetic information is passed on from individuals who had genetic counseling to their at-risk relatives. This cross-study comparison explored genetic literacy both at the individual and the family level using data collected from three sequential studies conducted in the U.S. and Switzerland over ≥10 years. Participants were primarily females, at-risk or confirmed carriers of HBOC-associated pathogenic variants, who had genetic counselling, and ≥1 of their relatives who did not. Fifteen items assessed genetic literacy. Among 1933 individuals from 518 families, 38.5% had genetic counselling and 61.5% did not. Although genetic literacy was higher among participants who had counselling, some risk factors were poorly understood. At the individual level, genetic literacy was associated with having counselling, ≤5 years ago, higher education, and family history of cancer. At the family level, genetic literacy was associated with having counselling, higher education, and a cancer diagnosis. The findings suggest that specific genetic information should be emphasized during consultations, and that at-risk relatives feel less informed about inherited cancer risk, even if information is shared within families. There is a need to increase access to genetic information among at-risk individuals. [ABSTRACT FROM AUTHOR]

Simple Summary: Families with an inherited high risk of bowel cancer may struggle to share information about their diagnosis. This means that relatives are not always aware of their increased risk of cancer or able to access screening for the early detection of cancer. Through this study, we aimed to help such families by creating a website where patients could share confidential information with their relatives securely online. Following a survey and telephone interviews with affected individuals, the content of the website was developed to suit the needs of families. Website function was tested with patients to check feasibility and acceptability. Most participants wanted more information to support their adaptation to the diagnosis and help inform their relatives. This study demonstrates how health professionals can improve access to genetic testing and cancer screening in families at high risk of cancer, thus reducing morbidity and mortality. Individuals with pathogenic variants in genes predisposing to bowel cancer are encouraged to share this information within their families. Close relatives at 50% risk can have access to bowel cancer surveillance. However, many relatives remain unaware of their vulnerability or have insufficient information. We investigated the feasibility and acceptability of using a secure website to support information sharing within families at high risk of bowel cancer. Patients (n = 286) answered an anonymous cross-sectional survey, with 14 participating in telephone interviews. They reported that the diagnosis had a profound effect on them and their family relationships, and consequently desired more support from health professionals. Website content was created in response to the preferences of survey and interview participants. Reactions to the website from 12 volunteers were captured through remote usability testing to guide further refinement of the website. Participants welcomed the opportunity to store and share personal information via the website and wanted more information and help informing their relatives about the diagnosis. Important website topics were: healthy lifestyle; genetic testing; and how to talk to children about the diagnosis. A website providing online access to confidential documents was both feasible and acceptable and could translate into increased uptake of cancer surveillance, resulting in lower morbidity and mortality in these families. [ABSTRACT FROM AUTHOR]

Simple Summary: In general, 5–20% of all cancers are due to pathogenic variants in cancer genes that are passed down in the family. It is recommended that blood relatives of individuals with such a pathogenic variant have genetic testing, to identify if they also carry the same variant. This information will help their healthcare providers to make individualized cancer screening and prevention plans. However, only around 30% of at-risk relatives have genetic testing, presumably due to a lack of communication about inherited cancer genes among family members. In this paper, we identified interventions that were designed to improve family communication about hereditary cancer and/or genetic testing among at-risk relatives for two common hereditary cancer syndromes. We analyzed the components of these interventions and synthesized outcomes with statistical methods. Although we identified 14 eligible studies, there are still many unanswered questions about clinical and research implications with diverse samples to be addressed in future studies. Evidence-based guidelines recommend cascade genetic testing of blood relatives of known Hereditary Breast and Ovarian Cancer (HBOC) or Lynch Syndrome (LS) cases, to inform individualized cancer screening and prevention plans. The study identified interventions designed to facilitate family communication of genetic testing results and/or cancer predisposition cascade genetic testing for HBOC and LS. We conducted a systematic review and meta-analysis of randomized trials that assessed intervention efficacy for these two outcomes. Additional outcomes were also recorded and synthesized when possible. Fourteen articles met the inclusion criteria and were included in the narrative synthesis and 13 in the meta-analysis. Lack of participant blinding was the most common risk of bias. Interventions targeted HBOC (n = 5); both HBOC and LS (n = 4); LS (n = 3); or ovarian cancer (n = 2). All protocols (n = 14) included a psychoeducational and/or counseling component. Additional components were decision aids (n = 4), building communication skills (n = 4), or motivational interviewing (n = 1). The overall effect size for family communication was small (g = 0.085) and not significant (p = 0.344), while for cascade testing, it was small (g = 0.169) but significant (p = 0.014). Interventions show promise for improving cancer predisposition cascade genetic testing for HBOC and LS. Future studies should employ family-based approaches and include racially diverse samples. [ABSTRACT FROM AUTHOR]