Investigating psychological mechanisms linking pain severity to depression symptoms in women cancer survivors at a cancer center with a rural catchment area.

PURPOSE: Women cancer survivors, especially those in rural areas, with high levels of depression may be acutely susceptible to pain due to the ways they think, feel, and behave. The current study seeks to elucidate the relationship between symptoms of depression and pain severity in women cancer survivors, by examining the putative mediators involved in this relationship, specifically their self-efficacy for managing their health, how overwhelmed they were from life's responsibilities, and relational burden. METHODS: Self-report data were collected from 183 cancer survivors of breast, cervical, ovarian, or endometrial/uterine cancer, who were between 6 months and 3 years post-active therapy. RESULTS: Women cancer survivors with higher (vs. lower) symptoms of depression had more severe pain. Individual mediation analyses revealed that survivors with higher levels of depression felt more overwhelmed by life's responsibilities and had lower self-efficacy about managing their health, which was associated with greater pain severity. When all mediators were simultaneously entered into the same model, feeling overwhelmed by life's responsibilities significantly mediated the link between survivors' symptoms of depression and their pain severity. CONCLUSIONS: The relationship between symptoms of depression and pain severity in women cancer survivors may be attributed in part to their self-efficacy and feeling overwhelmed by life's responsibilities. Early and frequent assessment of psychosocial factors involved in pain severity for women cancer survivors may be important for managing their pain throughout the phases of cancer survivorship.

Cancer Screening and Treatment Delays During the COVID-19 Pandemic and the Role of Health Literacy in Care Re-engagement: Findings from an NCI-Designated Comprehensive Cancer Center sample.

The COVID-19 pandemic has led to numerous delays in cancer-related care and cancer-specific screening, but the extent is not fully understood. For those that experience a delay or disruption in care, health related self-management is required to re-engage in care pathways and the role of health literacy in this pathway has not been explored. The purpose of this analysis is to (1) report the frequency of self-reported delays in cancer treatment and preventative screening services at an academic, NCI-designated center during the COVID-19 pandemic and (2) investigate cancer-related care and screening delays among those with adequate and limited health literacy. A cross-sectional survey was administered from an NCI-designated Cancer Center with a rural catchment area during November 2020 through March 2021. A total of 1,533 participants completed the survey, and nearly 19 percent of participants were categorized as having limited health literacy. Twenty percent of those with a cancer diagnosis reported a delay in cancer-related care; and 23-30% of the sample reported a delay in cancer screening. In general, the proportions of delays among those with adequate and limited health literacy were similar with the exception of colorectal cancer screening. There was also a notable difference in the ability to re-engage in cervical cancer screening among those with adequate and limited health literacy. Thus, there is a role for those engaged in cancer-related education and outreach to offer additional navigation resources for those at risk to cancer-related care and screening disruptions. Future study is warranted to investigate the role of health literacy on cancer care engagement.

Evaluating the impact of patients' psychological and physical problems on their interest in participating in research at a cancer center with a rural catchment area.

BACKGROUND: Cancer patients' participation in research trials is essential to improving their care and treatment. In a large sample of adults recently diagnosed with cancer, the aim of the current study is to investigate the relationship between cancer patients' interest in research and the psychological and physical problems they experience resulting from their cancer diagnosis. METHOD: We analyzed data from 906 cancer patients collected during routine clinical care. Correlational analyses focused on the relationship between patients' psychological and physical problems and their interest in research. Hierarchical binary logistic regression analyses tested whether patients' psychological/physical problems as a block predicted their interest in research, above and beyond their sociodemographic characteristics. RESULTS: Higher levels of patients' anxiety, fear of cancer treatment, difficulty managing emotions, worry, suicidal/homicidal ideation, fatigue, problems related to physical appearance, sleep difficulty, and changes to weight/appetite, were associated with a greater interest in research. Patients' psychological/physical problems, as a block, incrementally predicted their interest in research (Δχ2 = 24.34, df = 14, p = .04, Δr2=0.05), though none of the individual psychological/physical problems were found to be significant predictors. A higher level of education was significantly positively associated with an increased likelihood of being interested in research (OR = 1.26, 95%CI = 1.09, 1.46, p = .001). CONCLUSION: Cancer patients' problems stemming from their diagnosis can be important factors in their decision to participate in research. Depending on the needs of the trial in question, researchers may want to account for patients' level of symptom burden in deciding who to approach for enrollment in a research trial.

The lived experience during the peri-diagnostic period of breast cancer: A scoping review.

OBJECTIVES: The aim of this scoping review is to provide an overview of the existing research that investigates the lived experience during the peri-diagnostic period of breast cancer. METHODS: Nine databases were searched for relevant literature between January 2007 and April 2019. Data were extracted and categorized using deductive and inductive approaches. RESULTS: A majority of the 66 studies included used qualitative methods to retrospectively explore the treatment decision making process of female breast cancer patients. Patients experienced uncertainty, emotional distress, and a need for more information from providers and relied on social support and family guidance during this period. CONCLUSIONS: The results of this review show that the burdens experienced during the peri-diagnostic period parallel those in later periods of cancer care. However, these burdens are prompted by different circumstances. More research is needed to explore the lived experience during this period through the use of mixed-methods and by recruiting a diverse sample with regards to role in the breast cancer experience, age, gender, race, and ethnicity. PRACTICE IMPLICATIONS: Interventions positioned at earlier points in the breast cancer experience should provide informational support, which could be delivered through shared decision making models. Additional support could be facilitated by patient navigation programs and health information technology.

Spatial analysis of colorectal cancer outcomes and socioeconomic factors in Virginia.

BACKGROUND: Colorectal cancer (CRC) disparities vary by country and population group, but often have spatial features. This study of the United States state of Virginia assessed CRC outcomes, and identified demographic, socioeconomic and healthcare access contributors to CRC disparities. METHODS: County- and city-level cross-sectional data for 2011-2015 CRC incidence, mortality, and mortality-incidence ratio (MIR) were analyzed for geographically determined clusters (hotspots and cold spots) and their correlates. Spatial regression examined predictors including proportion of African American (AA) residents, rural-urban status, socioeconomic (SES) index, CRC screening rate, and densities of primary care providers (PCP) and gastroenterologists. Stationarity, which assesses spatial equality, was examined with geographically weighted regression. RESULTS: For incidence, one CRC hotspot and two cold spots were identified, including one large hotspot for MIR in southwest Virginia. In the spatial distribution of mortality, no clusters were found. Rurality and AA population were most associated with incidence. SES index, rurality, and PCP density were associated with spatial distribution of mortality. SES index and rurality were associated with MIR. Local coefficients indicated stronger associations of predictor variables in the southwestern region. CONCLUSIONS: Rurality, low SES, and racial distribution were important predictors of CRC incidence, mortality, and MIR. Regions with concentrations of one or more factors of disparities face additional hurdles to improving CRC outcomes. A large cluster of high MIR in southwest Virginia region requires further investigation to improve early cancer detection and support survivorship. Spatial analysis can identify high-disparity populations and be used to inform targeted cancer control programming.

Use of Mental Health Apps by Patients With Breast Cancer in the United States: Pilot Pre-Post Study.

BACKGROUND: Nearly half of the patients with breast cancer experience clinically significant mental distress within the first year of receiving their cancer diagnosis. There is an urgent need to identify scalable and cost-efficient ways of delivering empirically supported mental health interventions to patients with breast cancer. OBJECTIVE: The aim of this study was to evaluate the feasibility of in-clinic recruitment for a mobile phone app study and to evaluate the usability and preliminary impact of a suite of mental health apps (IntelliCare) with phone coaching on psychosocial distress symptoms in patients recently diagnosed with breast cancer. METHODS: This pilot study adopted a within-subject, 7-week pre-post study design. A total of 40 patients with breast cancer were recruited at a US National Cancer Institute-designated clinical cancer center. Self-reported distress (Patient Health Questionnaire-4) and mood symptoms (Patient-Reported Outcomes Measurement Information System depression and anxiety scales) were assessed at baseline and postintervention. App usability was assessed at postintervention. RESULTS: The minimum recruitment threshold was met. There was a significant decrease in general distress symptoms, as well as symptoms of depression and anxiety, from baseline to postintervention. Overall, participants reported high levels of ease of app use and learning. Scores for app usefulness and satisfaction were reinforced by some qualitative feedback suggesting that tailoring the apps more for patients with breast cancer could enhance engagement. CONCLUSIONS: There is a dire need for scalable, supportive interventions in cancer. The results from this study inform how scalable mobile phone-delivered programs with additional phone support can be used to support patients with breast cancer. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/11452.

A Novel Mobile Phone App Intervention With Phone Coaching to Reduce Symptoms of Depression in Survivors of Women's Cancer: Pre-Post Pilot Study.

BACKGROUND: Psychological distress is a major issue among survivors of women's cancer who face numerous barriers to accessing in-person mental health treatments. Mobile phone app-based interventions are scalable and have the potential to increase access to mental health care among survivors of women's cancer worldwide. OBJECTIVE: This study aimed to evaluate the acceptability and preliminary efficacy of a novel app-based intervention with phone coaching in a sample of survivors of women's cancer. METHODS: In a single-group, pre-post, 6-week pilot study in the United States, 28 survivors of women's cancer used iCanThrive, a novel app intervention that teaches skills for coping with stress and enhancing well-being, with added phone coaching. The primary outcome was self-reported symptoms of depression (Center for Epidemiologic Studies Depression Scale). Emotional self-efficacy and sleep disruption were also assessed at baseline, 6-week postintervention, and 4 weeks after the intervention period. Feedback obtained at the end of the study focused on user experience of the intervention. RESULTS: There were significant decreases in symptoms of depression and sleep disruption from baseline to postintervention. Sleep disruption remained significantly lower at 4-week postintervention compared with baseline. The iCanThrive app was launched a median of 20.5 times over the intervention period. The median length of use was 2.1 min. Of the individuals who initiated the intervention, 87% (20/23) completed the 6-week intervention. CONCLUSIONS: This pilot study provides support for the acceptability and preliminary efficacy of the iCanThrive intervention. Future work should validate the intervention in a larger randomized controlled study. It is important to develop scalable interventions that meet the psychosocial needs of different cancer populations. The modular structure of the iCanThrive app and phone coaching could impact a large population of survivors of women's cancer.

A Case-Control Study to Add Volumetric or Clinical Mammographic Density into the Tyrer-Cuzick Breast Cancer Risk Model.

BACKGROUND: Accurate breast cancer risk assessment for women attending routine screening is needed to guide screening and preventive interventions. We evaluated the accuracy of risk predictions from both visual and volumetric mammographic density combined with the Tyrer-Cuzick breast cancer risk model. METHODS: A case-control study (474 patient participants and 2243 healthy control participants) of women aged 40-79 years was performed using self-reported classical risk factors. Breast density was measured by using automated volumetric software and Breast Imaging and Reporting Data System (BI-RADS) density categories. Odds ratios (95% CI) were estimated by using logistic regression, adjusted for age, demographic factors, and 10-year risk from the Tyrer-Cuzick model, for a change from the 25th to 75th percentile of the adjusted percent density distribution in control participants (IQ-OR). RESULTS: After adjustment for classical risk factors in the Tyrer-Cuzick model, age, and body mass index (BMI), BI-RADS density had an IQ-OR of 1.55 (95% CI = 1.33 to 1.80) compared with 1.40 (95% CI = 1.21 to 1.60) for volumetric percent density. Fibroglandular volume (IQ-OR = 1.28, 95% CI = 1.12 to 1.47) was a weaker predictor than was BI-RADS density (Pdiff = 0.014) or volumetric percent density (Pdiff = 0.065). In this setting, 4.8% of women were at high risk (8% + 10-year risk), using the Tyrer-Cuzick model without density, and 7.1% (BI-RADS) compared with 6.8% (volumetric) when combined with density. CONCLUSION: The addition of volumetric and visual mammographic density measures to classical risk factors improves risk stratification. A combined risk could be used to guide precision medicine, through risk-adapted screening and prevention strategies.

Use of Mental Health Apps by Breast Cancer Patients and Their Caregivers in the United States: Protocol for a Pilot Pre-Post Study.

BACKGROUND: Over one-third of cancer patients experience clinically significant mental distress, and distress in caregivers can exceed that of the cancer patients for whom they care. There is an urgent need to identify scalable and cost-efficient ways of delivering mental health interventions to cancer patients and their loved ones. OBJECTIVE: The aim of this study is to describe the protocol to pilot a mobile app-based mental health intervention in breast cancer patients and caregivers. METHODS: The IntelliCare mental health apps are grounded in evidence-based research in psychology. They have not been examined in cancer populations. This pilot study will adopt a within-subject, pre-post study design to inform a potential phase III randomized controlled trial. A target sample of 50 individuals (with roughly equal numbers of patients and caregivers) at least 18 years of age and fluent in English will be recruited at a US National Cancer Institute designated clinical cancer center. Consent will be obtained in writing and a mobile phone will be provided if needed. Self-report surveys assessing mental health outcomes will be administered at a baseline session and after a 7-week intervention. Before using the apps, participants will receive a 30-min coaching call to explain their purpose and function. A 10-min coaching call 3 weeks later will check on user progress and address questions or barriers to use. Self-report and semistructured interviews with participants at the end of the study period will focus on user experience and suggestions for improving the apps and coaching in future studies. RESULTS: This study is ongoing, and recruitment will be completed by the end of 2018. CONCLUSIONS: Results from this study will inform how scalable mobile phone-delivered programs can be used to support breast cancer patients and their loved ones. TRIAL REGISTRATION: ClinicalTrials.gov NCT03488745; https://clinicaltrials.gov/ct2/show/NCT03488745. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/11452.

Examining the feasibility, acceptability, and potential utility of mobile distress screening in adult cancer patients.

OBJECTIVE: A common method of distress monitoring in cancer patients relies on static and retrospective data collected in-person at the time of a health care provider appointment. Relatively little work has examined the potential usefulness of mobile distress monitoring using cancer patients' smartphones. The current study deployed longitudinal distress monitoring using secure text messaging. METHODS: In an observational study, a total of 52 cancer patients receiving active cancer treatment (Mage  = 58, 62% female) received a text message once a week for 4 weeks. Text messages contained a secure link to complete online the Patient Health Questionnaire-4 (PHQ-4), a commonly used distress screener. RESULTS: Cancer patients completed a distress screener 75% of the time they received a text message. On average, it took less than a minute to complete each mobile distress screener. Geolocation data indicated that cancer patients completed distress screeners across a range of locations. Analyses of model fit of distress scores indicated significant heterogeneity in variability of distress scores over time and across cancer patients (AIC = 630.5). Quantitative feedback from cancer patients at the end of the study indicated high ease of use, ease of learning, and satisfaction of completing mobile distress screeners. CONCLUSIONS: These findings support the use of secure text messaging to monitor longitudinal, out of clinic, distress in cancer patients. Findings also highlight the importance of mobile-based approaches to distress screening in order to maximize opportunities to intervene.

Risk factors for poor health-related quality of life in cancer survivors with multiple chronic conditions: exploring the role of treatment burden as a mediator.

PURPOSE: The purpose of this study was to identify risk factors for poor health-related quality of life (HRQL) in multi-morbid adult cancer survivors and explore whether perceived treatment and self-management burden mediate any of these relationships. METHODS: Ninety-one multi-morbid cancer survivors (median age: 65 years) completed surveys at baseline and 6 months. Demographic, psychosocial, and health care-related factors were assessed as were perceived treatment burden and general HRQL (physical and mental health). Data on medical diagnoses and cancer treatment were extracted from the medical record. Bivariate correlations screened for associations between predictors and outcomes, with significant predictors entered into multivariable linear regressions to identify unique risk factors for greater treatment burden and poorer HRQL. Follow-up regressions examined whether treatment burden mediated any of the risk factor-outcome relationships. RESULTS: Factors that correlated with higher baseline treatment burden included: having more diagnoses, less formal education, having seen more physicians in the past 6 months, having a mental health diagnosis, not having a set routine for one's self-management, low health literacy, low self-efficacy for self-management, and low social support (Ps <0.05). Among these, factors that also correlated with worse 6-month HRQL outcome included: having more diagnoses, having seen more physicians in the past 6 months, having a mental health diagnosis, not having a set routine for one's self-management, low health literacy, low self-efficacy, and low social support (Ps <0.05). Multivariable regressions showed that some of these factors independently predicted higher treatment burden and/or worse HRQL. Low self-efficacy was the most robust independent risk factor for poor HRQL (bs: 0.34-0.49, Ps <0.005), with evidence supporting that the relationships were partially mediated by treatment burden. CONCLUSION: Monitoring of psychosocial and health care-related risk factors for high treatment burden and poor HRQL can identify multi-morbid cancer survivors in need of extra support and could inform a more personalized treatment approach.

The Association of Mammographic Density and Molecular Breast Cancer Subtype.

Background: Mammographic density (MD) is associated with increased breast cancer risk, yet limited data exist on an association between MD and breast cancer molecular subtypes.Methods: Women ages 18 years and older with breast cancer and available mammograms between 2003 and 2012 were enrolled in a larger study on MD. MD was classified by the Breast Imaging Reporting and Data System (BI-RADS) classification and by volumetric breast percent density (Volpara Solutions). Subtype was assigned by hormone receptor status, tumor grade, and mitotic score (MS). Subtypes included: Luminal-A (ER/PR+ and grade = 1; ER/PR+ and grade = 2 and MS = 1; ER+/PR- and grade = 1; n = 233); Luminal-B (ER+ and grade = 3 or MS = 3; ER+/PR- and grade = 2; ER/PR+ and grade = 2 and MS = 2; n = 79); Her-2-neu+ (H2P; n = 59); triple-negative (ER/PR-, Her-2-; n = 86). Precancer factors including age, race, body mass index (kg/m2), family history of breast cancer, and history of lobular carcinoma in situ were analyzed.Results: A total of 604 patients had invasive cancer; 457 had sufficient information for analysis. Women with H2P tumors were younger (P = 0.011) and had the highest volumetric percent density (P = 0.002) among subgroups. Multinomial logistic regression (LA = reference) demonstrated that although quantitative MD does not significantly differentiate between all subtypes (P = 0.123), the association between MD and H2P tumors is significant (OR = 1.06; confidence interval, 1.01-1.12). This association was not seen using BI-RADS classification in bivariable analysis but was statistically significant (P = 0.047) when controlling for other precancer factors.Conclusions: Increased MD is more strongly associated with H2P tumors when compared with LA.Impact: Delineating risk factors specific to breast cancer subtype may promote development of individualized risk prediction models and screening strategies. Cancer Epidemiol Biomarkers Prev; 26(10); 1487-92. ©2017 AACR.

Impact of Urban Neighborhood Disadvantage on Late Stage Breast Cancer Diagnosis in Virginia.

Research suggests that residents of inner-city urban neighborhoods have higher rates of late stage cancer diagnosis. Identifying urban neighborhoods with high rates of both concentrated disadvantage and late stage cancer diagnosis may assist health care providers to target screening interventions to reduce disparities. The purposes of this study were to (1) create an index to evaluate concentrated disadvantage (CD) using non-racial measures of poverty, (2) determine the impact of neighborhood CD on late stage breast cancer diagnosis in US cities, and (3) to understand the role of obesity on this relationship. We used census block group- (CBG) level poverty indicators from five Virginia cities to develop the index. Breast cancer cases of women aged 18-65 who lived in the five cities were identified from the 2000-2012 Virginia Cancer Registry. A logistic regression model with random intercept was used to evaluate the impact of disadvantage on late stage breast cancer diagnosis. CBG-level maps were developed to geographically identify neighborhoods with both high rates of CD and late breast cancer staging. Over 900 CBGs and 6000 breast cases were included. Global fit of the concentrated disadvantage model was acceptable. The effect of disadvantage on late stage was significant (OR = 1.0083, p = 0.032). Inner-city poverty impacts risk of late stage breast cancer diagnosis. Area-level obesity is highly correlated with neighborhood poverty (ρ = 0.74, p < 0.0001) but the mediating direct and indirect effects are non-significant. Intervening in these high poverty neighborhoods may help combat disparities in late stage diagnosis for urban poor and for minorities living in these underserved neighborhoods, but more study is needed to understanding the complex relationship between concentrated neighborhood poverty, obesity, and late stage diagnosis.

What Do Women Know About Breast Density? Results From a Population Survey of Virginia Women.

PURPOSE: Breast density reduces the sensitivity of mammography and is a moderate independent risk factor for breast cancer. Virginia is one of 24 states that currently require notification of patients when they have dense breasts. However, little is known about what women in the general population know about breast density. This survey study assessed knowledge about breast density and about its impact on mammography and breast cancer risk. METHODS: A random sample of 1024 Virginia women between ages 35 and 70 years without breast cancer, reached by landline and cell phone, who completed a 24-minute interview. Bivariate and multivariate analysis was performed. RESULTS: Thirty-six percent of respondents had been informed about their breast density. These women were more likely to be familiar with the term "breast density." Seventy-five percent of respondents reported being either somewhat or very familiar with risk factors for breast cancer, but <1% spontaneously listed breast density as a risk factor. About half of women who had a mammogram in the last year were aware of their breast density. Overall, only one in five women were aware that density reduces the sensitivity of mammography and only one in eight were aware that density increases breast cancer risk. Very few respondents (5.3%) were able to correctly answer three density knowledge questions. Lower-education, African-American, and Jewish women were less knowledgeable about breast density. CONCLUSIONS: Although women are becoming aware of the term "breast density," they may not understand its relationship to cancer detection on mammography and, especially, its relationship to breast cancer risk.

Comparative effectiveness research in cancer genomics and precision medicine: current landscape and future prospects.

A major promise of genomic research is information that can transform health care and public health through earlier diagnosis, more effective prevention and treatment of disease, and avoidance of drug side effects. Although there is interest in the early adoption of emerging genomic applications in cancer prevention and treatment, there are substantial evidence gaps that are further compounded by the difficulties of designing adequately powered studies to generate this evidence, thus limiting the uptake of these tools into clinical practice. Comparative effectiveness research (CER) is intended to generate evidence on the "real-world" effectiveness compared with existing standards of care so informed decisions can be made to improve health care. Capitalizing on funding opportunities from the American Recovery and Reinvestment Act of 2009, the National Cancer Institute funded seven research teams to conduct CER in genomic and precision medicine and sponsored a workshop on CER on May 30, 2012, in Bethesda, Maryland. This report highlights research findings from those research teams, challenges to conducting CER, the barriers to implementation in clinical practice, and research priorities and opportunities in CER in genomic and precision medicine. Workshop participants strongly emphasized the need for conducting CER for promising molecularly targeted therapies, developing and supporting an integrated clinical network for open-access resources, supporting bioinformatics and computer science research, providing training and education programs in CER, and conducting research in economic and decision modeling.

Challenges to accrual predictions to phase III cancer clinical trials: a survey of study chairs and lead statisticians of 248 NCI-sponsored trials.

BACKGROUND: Research on barriers to accrual has typically emphasized factors influencing participation after trial activation. PURPOSE: We sought to identify factors influencing trial design and accrual predictions prior to trial activation associated with sufficient accrual. METHODS: A 30-question web-based survey was sent to the study chair and lead statistician for all 248 phase III trials open in 1993-2002 by five Clinical Trials Cooperative Groups. Questions addressed prior trial experience, trial design elements, accrual predictions, and perceived accrual influences. Accrual sufficiency categorization was derived from Clinical Trials Cooperative Group records: sufficient accrual included trials closed with complete accrual or at interim analysis, insufficient accrual included trials closed with inadequate accrual. Responses were analyzed by respondent role (study chair/lead statistician) and accrual sufficiency. RESULTS: Three hundred and nine eligible responses were included (response rate, 63%; lead statisticians, 81%; and study chairs, 45%), representing trials with sufficient (63%) and insufficient accruals (37%). Study chair seniority or lead statistician experience was not linked to accrual sufficiency. Literature review, study chair's personal experience, and expert opinion within Clinical Trials Cooperative Group most commonly influenced control arm selection. Clinical Trials Cooperative Group experience most influenced accrual predictions. These influences were not associated with accrual sufficiency. Among respondents citing accrual difficulties (41%), factors negatively influencing accrual were not consistently identified. Respondents credited three factors with positively influencing accrual: clinical relevance of study, lack of competing trials, and protocol paralleling normal practice. LIMITATIONS: Perceptions of lead statisticians and study chairs may not accurately reflect accrual barriers encountered by participating physicians or patients. Survey responses may be subject to recall bias. CONCLUSION: Consistent factors explaining poor accrual were not identified, suggesting reasons for poor accrual are not well understood and warrant further study. Alternate strategies for accrual prediction are needed since Clinical Trials Cooperative Group experience is linked to successful and unsuccessful accrual.

"Are you at risk for hereditary breast cancer?": development of a personal risk assessment tool for hereditary breast and ovarian cancer.

Identification of risk for the hereditary breast and ovarian cancer syndrome (HBOC) is important, as research has demonstrated the benefits of risk-reducing interventions for women with or at risk for this disorder. Knowledge among women regarding risk factors for hereditary breast cancer and the existence of cancer genetics services appears limited. The goal of this project was to develop a tool to broaden women's awareness regarding their potential risk for HBOC. A formal instructional design process was used to develop a brochure to facilitate recognition of HBOC risk among women attending a no-cost breast and cervical cancer screening clinic. Brochure development was guided by gathering feedback from potential users early and often. The resulting brochure included four parts: (1) a brief description of the impact of hereditary breast cancer risk on one's health; (2) a personal and family history collection table; (3) a series of questions enabling the user to self-assess HBOC risk; (4) a list of resources for women at risk for HBOC. User feedback indicated that the brochure was easy to use. The project demonstrated that women can self-evaluate their risk for HBOC. Future work will evaluate this tool among a broader population of women.

Information needs about hereditary breast cancer among women with early-onset breast cancer.

To explore hereditary breast cancer (HBC) information needs of early-onset breast cancer survivors, two questionnaires were mailed to women diagnosed at age <50 years. The Family History Questionnaire, sent to women treated at 34 Virginia hospitals, was designed to identify women with suspected HBC versus women with presumed sporadic breast cancer (SBC). Among 314 respondents, 137 reported personal/family histories suggestive of HBC. A total of 287 (87%) participants responded to the subsequent Knowledge, Attitudes, and Beliefs Questionnaire, which assessed HBC knowledge, attitudes, and beliefs, including HBC information needs, sources, and perceived value. Fifty-two percent of women reported seeking any HBC information. Women with presumed SBC were as likely to seek information as those with suspected HBC. Women with daughters were more likely to seek information. Many (71%) women reported finding the information sought, including information about their children's and relatives' risks, DNA testing, treatment differences for HBC, and genetic counseling.

Breast cancer survivors' attitudes about communication of breast cancer risk to their children.

Perceptions of breast cancer survivors regarding educating their children about hereditary breast cancer risk are underexplored. This study examined attitudes of early-onset breast cancer survivors concerning whether, at what age, and how their children should be educated about potential risk for hereditary breast cancer. Women with breast cancer diagnosed < age 50 years between 1994 and 1997 were recruited from 34 Virginia hospitals. Participants responded to two surveys. The Family History Questionnaire permitted participant classification into two groups based on risk for hereditary disease, as determined by personal and family history. The Knowledge, Attitudes and Beliefs Questionnaire addressed participants' concerns regarding their children's breast cancer risk, perceptions of their children's concerns about their own risk, and whether, at what age, and from what source their children should be informed about their own risk. Among 267 participants, the average age was 47.5 years; 90% were Caucasian, 7% were African American; 52% had suspected hereditary breast cancer. Of participants with children, 81% indicated concern about their children's breast cancer risk; 55% reported that their children had expressed concern about their own risk. Seventy-one percent of participants believed the age for informing children about hereditary breast cancer risk to be before 18 years. Eighty-four percent cited the child's parents and 65% cited health professionals as a preferred information source. No differences in responses between participants with suspected hereditary breast cancer versus presumed sporadic breast cancer were noted. These data establish the need for educational resources regarding hereditary breast cancer for children of early-onset breast cancer survivors.