Examining the impact of a multimedia intervention on decisional conflict and psychological distress among early-stage breast cancer patients: results from a nationwide RCT.

We conducted a nationwide, randomized controlled trial to evaluate the impact of Healing Choices, a novel interactive education and treatment decision program rooted in the self-regulation theory framework, on decisional conflict and psychological distress at 2-month post-intervention in women with early-stage breast cancer. Patients were randomized to receive the National Cancer Institute's standard print material (control) or standard print material plus Healing Choices (the intervention). The final sample at 2-month post-intervention consisted of N = 388 participants (intervention: n = 197; control: n = 191). There were no significant differences in decisional conflict or its subscales; however, psychological distress was higher in the intervention group (16.09 ± 10.25) than in the control group (14.37 ± 8.73) at follow-up, B = 1.88, 95% CI [-0.03, 3.80], t(383) = 1.94, p = .05. Upon further examination, we found that engagement with the intervention was low-41%-prompting as-treated analyses, which showed no difference in distress between users and nonusers and a positive impact of Healing Choices on decisional conflict: decisional support subscale: users (35.36 ± 15.50) versus nonusers (39.67 ± 15.99), B = -4.31 (s.e. = 2.09), p = .04. Multiple recommendations for moving ahead stem from this work: (i) intent-to-treat analyses appeared to cause distress, cautioning against interventions that may lead to information overload; (ii) engagement with the intervention is low and future work needs to focus on increasing engagement and monitoring it throughout the study; and (iii) in studies with low engagement, as-treated analyses are critical.

Healing Choices is a multimedia software program that provides information and decision-making support for women with early-stage breast cancer. We present the results of a randomized controlled trial that evaluated the impact of Healing Choices, compared with standard of care (National Cancer Institute's standard print material), on decisional conflict and psychological distress. In total, 388 participants (197 in the intervention and 191 in the control group) completed the 2-month post-intervention assessment. Results indicated that Healing Choices did not help with treatment decision-making but was associated with higher levels of psychological distress. Use among women assigned to Healing Choices, however, was low, at 41%. When comparing women who used the program with those who did not, we found that the effect of elevated distress disappeared, while program users felt more support than nonusers during the decision-making process. In the future, interventions such as Healing Choices should be regulated so as not to cause distress via information overload, a focus on monitoring and increasing engagement with the intervention is necessary, and, when engagement is low, as-treated analyses are critical to explore the efficacy of the intervention.

Examining the impact of a multimedia intervention on treatment decision-making among newly diagnosed prostate cancer patients: results from a nationwide RCT.

Men diagnosed with early stage prostate cancer face multiple treatment options, each with distinctive side effects that have significant implications for post-treatment quality of life. Healing Choices for Men with Prostate Cancer is a multimedia educational and decision aid program. This nation-wide randomized controlled trial evaluated the impact of Healing Choices on reducing decisional conflict and distress. Eligible prostate cancer patients who called the National Cancer Institute's Cancer Information Service (CIS) were invited to participate. After a baseline interview, participants were randomized to usual personalized consultation with a CIS specialist (comparison condition) or CIS personalized consultation plus the Healing Choices program (intervention condition). The Decision Conflict Scale and Impact of Event Scale assessed decisional conflict about prostate cancer treatment and cancer-related distress, respectively. Analyses evaluated group differences at 2 months postenrollment. Hypothesized moderation of intervention effects by demographic and clinical characteristics were evaluated. The final sample consisted of N = 349 participants (intervention: n = 181; comparison n = 168). Men were on average 64 years old, primarily White, and well educated. The difference in total decisional conflict was not significant (DCS total score; F[1,311] = .99, p = .32). The difference in cancer-related distress at 2 months between the intervention and the comparison groups was not significant (F[1,337] = .01, p = .93). Evaluation of specific decision processes indicated a significant effect on levels of perceived decisional support (intervention, M = 34.8, SD = 15.7; comparison, M = 38.3, SD = 16.1; F[1,337] = 3.74, p = .05). The intervention effect was greatest for nonwhite minority participants (b = -9.65, SE = 4.67) and those with lower educational attainment (b = 3.87, SE = 2.21). This interactive, comprehensive education and decision aid program may be most effective for a subset of prostate cancer patients in need of educational and decisional support.

A blueprint for genomic nursing science.

PURPOSE: This article reports on recommendations arising from an invitational workshop series held at the National Institutes of Health for the purposes of identifying critical genomics problems important to the health of the public that can be addressed through nursing science. The overall purpose of the Genomic Nursing State of the Science Initiative is to establish a nursing research blueprint based on gaps in the evidence and expert evaluation of the current state of the science and through public comment. ORGANIZING CONSTRUCTS: A Genomic Nursing State of the Science Advisory Panel was convened in 2012 to develop the nursing research blueprint. The Advisory Panel, which met via two webinars and two in-person meetings, considered existing evidence from evidence reviews, testimony from key stakeholder groups, presentations from experts in research synthesis, and public comment. FINDINGS: The genomic nursing science blueprint arising from the Genomic Nursing State of Science Advisory Panel focuses on biologic plausibility studies as well as interventions likely to improve a variety of outcomes (e.g., clinical, economic, environmental). It also includes all care settings and diverse populations. The focus is on (a) the client, defined as person, family, community, or population; (b) the context, targeting informatics support systems, capacity building, education, and environmental influences; and (c) cross-cutting themes. It was agreed that building capacity to measure the impact of nursing actions on costs, quality, and outcomes of patient care is a strategic and scientific priority if findings are to be synthesized and aggregated to inform practice and policy. CONCLUSIONS: The genomic nursing science blueprint provides the framework for furthering genomic nursing science to improve health outcomes. This blueprint is an independent recommendation of the Advisory Panel with input from the public and is not a policy statement of the National Institutes of Health or the federal government. CLINICAL RELEVANCE: This genomic nursing science blueprint targets research to build the evidence base to inform integration of genomics into nursing practice and regulation (such as nursing licensure requirements, institutional accreditation, and academic nursing school accreditation).

Establishing the effectiveness of patient decision aids: key constructs and measurement instruments.

BACKGROUND: Establishing the effectiveness of patient decision aids (PtDA) requires evidence that PtDAs improve the quality of the decision-making process and the quality of the choice made, or decision quality. The aim of this paper is to review the theoretical and empirical evidence for PtDA effectiveness and discuss emerging practical and research issues in the measurement of effectiveness. METHODS: This updated overview incorporates: a) an examination of the instruments used to measure five key decision-making process constructs (i.e., recognize decision, feel informed about options and outcomes, feel clear about goals and preferences, discuss goals and preferences with health care provider, and be involved in decisions) and decision quality constructs (i.e., knowledge, realistic expectations, values-choice agreement) within the 86 trials in the Cochrane review; and b) a summary of the 2011 Cochrane Collaboration's review of PtDAs for these key constructs. Data on the constructs and instruments used were extracted independently by two authors from the 86 trials and any disagreements were resolved by discussion, with adjudication by a third party where required. RESULTS: The 86 studies provide considerable evidence that PtDAs improve the decision-making process and decision quality. A majority of the studies (76/86; 88%) measured at least one of the key decision-making process or decision quality constructs. Seventeen different measurement instruments were used to measure decision-making process constructs, but no single instrument covered all five constructs. The Decisional Conflict Scale was most commonly used (n = 47), followed by the Control Preference Scale (n = 9). Many studies reported one or more constructs of decision quality, including knowledge (n = 59), realistic expectation of risks and benefits (n = 21), and values-choice agreement (n = 13). There was considerable variability in how values-choice agreement was defined and determined. No study reported on all key decision-making process and decision quality constructs. CONCLUSIONS: Evidence of PtDA effectiveness in improving the quality of the decision-making process and decision quality is strong and growing. There is not, however, consensus or standardization of measurement for either the decision-making process or decision quality. Additional work is needed to develop and evaluate measurement instruments and further explore theoretical issues to advance future research on PtDA effectiveness.

Blogging through cancer: young women's persistent problems shared online.

BACKGROUND: Many young women have turned to illness blogs to describe their lived experience with cancer. Blogs represent an untapped source of knowledge for researchers and clinicians. OBJECTIVE: The purpose of this qualitative, exploratory study was to describe the life disruptions caused by cancer among young women, as well as to understand the facilitators and barriers in accessing healthcare services during and after active treatment. METHODS: Sixteen Internet illness blogs were analyzed among women, aged between 20 and 39 years, diagnosed with cancer. These blogs were analyzed based on phenomenological qualitative methods and thematic analysis. RESULTS: There were 4 dimensions of persistent problems that were articulated in the narratives of the young women without any relief. They included pain and fatigue, insurance and financial barriers, concerns related to fertility, and symptoms of posttraumatic stress and anxiety. CONCLUSION: The young women's narratives capture fear, uncertainty, anger, and the debilitating nature of these persistent issues. Many of the women expressed their lingering physical, psychosocial, and emotional problems. IMPLICATIONS FOR PRACTICE: Online illness narratives are a naturalistic form of inquiry that allows nurses to understand the experience of the patient through their own words and accounts. This study provides a foundation for nursing-based interventions that transcend traditional clinic experiences.

Capturing treatment decision making among patients with solid tumors and their caregivers.

PURPOSE/OBJECTIVES: To examine the feasibility and acceptability of using a decision aid with an interactive decision-making process in patients with solid tumors and their caregivers during cancer-related treatment. RESEARCH APPROACH: A phenomenologic approach was used to analyze qualitative data, with a focus on the meaning of participants' lived experiences. Interviews were conducted by telephone or in person. SETTING: Outpatient clinics at two regional cancer centers. PARTICIPANTS: 160 total individuals; 80 patients with newly diagnosed breast (n = 22), advanced-stage prostate (n = 19), or advanced-stage lung (n = 39) cancer, and their caregivers (n = 80). METHODOLOGIC APPROACH: Twenty-seven of the 80 pairs engaged in audio recorded interviews that were conducted using a semistructured interview guide. Continuous text immersion revealed themes. Validity of qualitative analysis was achieved by member checking. FINDINGS: Significant findings included three themes: (a) the decision aid helped patients and caregivers understand treatment decisions better, (b) the decision aid helped patients and caregivers to be more involved in treatment decisions, and (c) frequent contact with the study nurse was valuable. CONCLUSIONS: Decision making was more complex than participants expected. The decision aid helped patients and caregivers make satisfying treatment decisions and become integral in a shared treatment decision-making process. INTERPRETATION: Decision aids can help patients and their caregivers make difficult treatment decisions affecting quantity and quality of life during cancer treatment. The findings provide valuable information for healthcare providers helping patients and their caregivers make treatment decisions through a shared, informed, decision-making process. KNOWLEDGE TRANSLATION: Decision aids can be helpful with treatment choices. Caregivers' understanding about treatment is just as important in the decision-making process as the patients' understanding. Incorporating decision aids that are delivered by healthcare providers or trained personnel has the potential to improve patients' decision satisfaction.

The development and preliminary testing of a multimedia patient-provider survivorship communication module for breast cancer survivors.

OBJECTIVE: This paper describes the development of a theory-guided and evidence-based multimedia training module to facilitate breast cancer survivors' preparedness for effective communication with their health care providers after active treatment. METHODS: The iterative developmental process used included: (1) theory and evidence-based content development and vetting; (2) user testing; (3) usability testing; and (4) participant module utilization. RESULTS: Formative evaluation of the training module prototype occurred through user testing (n = 12), resulting in modification of the content and layout. Usability testing (n = 10) was employed to improve module functionality. Preliminary web usage data (n = 256, mean age = 53, 94.5% White, 75% college graduate and above) showed that 59% of the participants accessed the communication module, for an average of 7 min per login. CONCLUSION: The iterative developmental process was informative in enhancing the relevance of the communication module. Preliminary web usage results demonstrate the potential feasibility of such a program. PRACTICE IMPLICATIONS: Our study demonstrates survivors' openness to the use of a web-based communication skills training module and outlines a systematic iterative user and interface program development and testing process, which can serve as a prototype for others considering such an approach.

Patient decisions about breast cancer chemoprevention: a systematic review and meta-analysis.

PURPOSE: Women at high risk of breast cancer face the complex decision of whether to take tamoxifen or raloxifene for breast cancer chemoprevention. We investigated what is known about decisions of women regarding chemoprevention. METHODS: Using MEDLINE, CINAHL, and PSYCINFO, plus reviewing reference lists of relevant articles, in December 2009 we identified 13 studies that addressed patient decisions about breast cancer chemoprevention, were published in 1995 or later, were peer-reviewed primary clinical studies, and reported rates at which participants showed interest in (hypothetical uptake) or accepted (real uptake) chemoprevention medications. RESULTS: Nine studies provided information about hypothetical breast cancer chemoprevention decisions (mean uptake rate, 24.7%) and five provided information about real decisions (mean uptake rate, 14.8%). The range of rates was wide, and each of the hypothetical uptake studies assessed interest differently. A logistic regression model found significant correlation with uptake of decision type (hypothetical versus real, odds ratio [OR] = 1.65; 95% CI, 1.26 to 2.16), educational or decision support intervention (provided v not, OR = 0.21; 95% CI, 0.17 to 0.27), and cohort risk for breast cancer (high-risk v general population, OR = 0.65; 95% CI, 0.56 to 0.75). Perceived vulnerability to breast cancer was consistently correlated with increased uptake, and concern for adverse effects was correlated with reduced uptake. All studies used a correlational/descriptive design, and most studies used convenience sampling strategies. CONCLUSION: Breast cancer chemoprevention uptake rates are low and variation is wide. Hypothetical uptake rates are higher than real uptake, and interventions markedly reduce uptake. Research is needed that uses reproducible sampling methods and examines decision support strategies that lead to quality decisions.

Which patient will feel down, which will be happy? The need to study the genetic disposition of emotional states.

PURPOSE: In quality-of-life (QL) research, the genetic susceptibility of negative and positive emotions is frequently ignored, taken for granted, or treated as noise. The objectives are to describe: (1) the major findings of studies addressing the heritable and environmental causes of variation in negative and positive emotional states and (2) the major biological pathways of and genetic variants involved in these emotional states. METHODS: Literature overview. RESULTS: The heritability estimates for anxiety and depression are 30-40%. Related traits as neuroticism and loneliness are also highly heritable. The hypothalamo-pituitary-adrenal axis is the 'final common pathway' for most depressive symptoms. The many findings of investigated genes are promising but not definitive. Heritability estimates of positive emotional states range between 40 and 50%. Life satisfaction and mental health share common genetic factors with optimism and self-esteem. The prefrontal cortex is a candidate brain area for positive emotional states. Biological and genetic research into positive emotional states is scarce. CONCLUSION: Genetically informative studies may provide insights into a wide variety of complex questions that traditional QL studies cannot deliver. This insight in turn will help us to design more effective supportive programs that could moderate the outcomes of genetically based predispositions.

The establishment of the GENEQOL consortium to investigate the genetic disposition of patient-reported quality-of-life outcomes.

To our knowledge, no comprehensive, interdisciplinary initiatives have been taken to examine the role of genetic variants on patient-reported quality-of-life outcomes. The overall objective of this paper is to describe the establishment of an international and interdisciplinary consortium, the GENEQOL Consortium, which intends to investigate the genetic disposition of patient-reported quality-of-life outcomes. We have identified five primary patient-reported quality-of-life outcomes as initial targets: negative psychological affect, positive psychological affect, self-rated physical health, pain, and fatigue. The first tangible objective of the GENEQOL Consortium is to develop a list of potential biological pathways, genes and genetic variants involved in these quality-of-life outcomes, by reviewing current genetic knowledge. The second objective is to design a research agenda to investigate and validate those genes and genetic variants of patient-reported quality-of-life outcomes, by creating large datasets. During its first meeting, the Consortium has discussed draft summary documents addressing these questions for each patient-reported quality-of-life outcome. A summary of the primary pathways and robust findings of the genetic variants involved is presented here. The research agenda outlines possible research objectives and approaches to examine these and new quality-of-life domains. Intriguing questions arising from this endeavor are discussed. Insight into the genetic versus environmental components of patient-reported quality-of-life outcomes will ultimately allow us to explore new pathways for improving patient care. If we can identify patients who are susceptible to poor quality of life, we will be able to better target specific clinical interventions to enhance their quality of life and treatment outcomes.

Mentoring nurses in familial cancer risk assessment and counseling: lessons learned from a formative evaluation.

BACKGROUND: As familial cancer genetic services moves into community practice increased numbers of trained health professionals are needed to counsel individuals seeking cancer risk information. Nurses have been targeted to provide cancer risk assessment and counseling. To help prepare nurses for this role, a 5-day training in familial cancer risk assessment and counseling followed by a long-distance mentorship to support continued skill development in the work environment was conducted by Fox Chase Cancer Center, Philadelphia, PA. METHODS: Four cohorts (N = 41) have completed the training and were randomized to either an immediate or delayed mentorship. A formative evaluation assessed the nurse's ability to consult with other genetic health professionals and build self-efficacy in counseling skills via responses to questionnaire. A post-mentorship interview evaluated the usefulness, timing and length of the mentorship. RESULTS: For both groups, there was a statistically significant improvement in self-efficacy for all skills from baseline to 6 months and an increased number of nurses consulting with genetic health professionals. All the nurses reported the value of the mentorship and those with less cancer risk counseling experience prior to the training needed support and resources for further skill and program development. Lessons learned from this formative evaluation are provided.

Assessment of neutropenia-related quality of life in a clinical setting.

PURPOSE/OBJECTIVES: To examine how neutropenia affects quality of life (QOL) and explore strategies to assess neutropenia-related QOL in clinical practice. DATA SOURCES: Published articles, abstracts, conference proceedings, and clinical practice guidelines. DATA SYNTHESIS: Neutropenia can have a detrimental effect on the QOL of patients receiving chemotherapy. A neutropenia-related QOL questionnaire can help nurses better identify patients at risk for developing neutropenia and monitor patients who already have it. In some cases, the questionnaire may be the first step in the initiation of interventions to improve patient care. Ideally, the QOL questionnaire should be easy to use, provide clinically meaningful information, and be easily adapted from existing QOL measurement tools. CONCLUSIONS: Effective implementation of QOL assessments into clinical practice can lead to the initiation of interventions that may improve neutropenia-related QOL in patients with cancer receiving chemotherapy. IMPLICATIONS FOR NURSING: Nurses can enhance their clinical judgment and affect patient treatment by implementing a questionnaire that assesses patients' neutropenia-related QOL.

Uptake rates for breast cancer genetic testing: a systematic review.

PURPOSE: Individuals and families dealing with the possibility of hereditary cancer risk face numerous decisions, including whether to obtain genetic testing. The purpose of this article is to determine what is known about the rate at which people obtain cancer genetic testing. METHODS: Using MEDLINE, CINAHL, and PSYCHINFO plus reviewing reference lists of relevant articles, we identified 40 studies in May 2002 that addressed breast cancer-related decisions, enrolled adult participants, were published in 1990 or more recently, were peer-reviewed primary clinical studies, addressed genetic testing either alone or in combination with genetic counseling, and reported rates at which participants showed interest in and/or underwent cancer genetic testing. Information regarding study design, participants, and genetic testing uptake rates was recorded. Each article was reviewed for methodologic quality using a flexible quality review system applicable to all study types. RESULTS: Of the 40 studies, 25 provided information about hypothetical genetic testing decisions, 14 about real decisions, and 1 about both. Mean hypothetical uptake was 66% (range, 20-96%) and real uptake was 59% (range, 25-96%). Multivariate logistic regression analyses found that decision type (real/hypothetical), personal and family history of breast cancer, and variability in sampling strategy, recruitment setting, and criteria for real and hypothetical uptake were independently associated with uptake. Our systematic review identified additional explanations for uptake variability (investigator influences, small sample sizes, variability in target populations, lack of clearly described sampling strategies, sampling methods open to bias, and variability in reporting associated risk factors). CONCLUSION: In addition to clinical characteristics, research methodologic issues are likely to be major determinants of variability in published breast cancer genetic testing uptake rates. An understanding of these issues will clarify to clinicians why their clinical experience may not be congruent with published rates and help guide future research.

Quality of life and chemotherapy-induced neutropenia.

This report summarizes recent data on neutropenia-related quality of life (QOL), including measures and interventions. Neutropenia is a common adverse effect of cytotoxic chemotherapy. The clinical significance of QOL in patients with chemotherapy-induced neutropenia (CIN) remains largely unexplored, although recent studies have shown a correlation between severe CIN and impaired QOL. Neutropenia typically occurs at the same time as other adverse effects. Data indicate that other toxicities are worse in the presence of febrile neutropenia and that these concurrent events may have a greater effect on QOL. Precautions that are taken to minimize the incidence of infection in patients with neutropenia may also affect their QOL. Future research should focus on accurately defining and measuring QOL in patients with CIN as well as on assessing ways to manage CIN more effectively and thus improve QOL. A number of interventions may have a positive influence on QOL in patients with cancer and neutropenia. Hematopoietic growth factor support, for example, reduces the incidence and sequelae of neutropenia and may provide a QOL benefit. To assess the effect of such interventions, neutropenia-specific QOL instruments, such as the Functional Assessment of Cancer Therapy-Neutropenia (FACT-N), may be valuable tools.

Risk modeling: applying evidence-based risk assessment in oncology nursing practice.

PURPOSE/OBJECTIVES: To introduce nurses to the concept of evidence-based risk models and their use in practice. DATA SOURCES: Poster presentations at meetings and published articles and books. DATA SYNTHESIS: Evidence-based risk models can be used in many clinical situations to identify patients at higher risk for a particular disease or clinical outcome, such as adverse events. These models may be based on molecular, epidemiologic, clinical, or family information obtained from patients. Risk models also may provide information about the cost-effectiveness of prevention, treatment, or support strategies for specific patients. CONCLUSIONS: Determining the risks of disease- or therapy-related adverse events can help healthcare providers and patients. Risk assessment to identify patients who are most likely to benefit from supportive care can lead to the cost-effective use of these supportive care measures and improved clinical outcomes. IMPLICATIONS FOR NURSING: Through awareness of relevant evidence-based risk models, nurses can become more effective in actively managing their patients care. Because of their close and ongoing contact with patients with cancer, oncology nurses are in an ideal position to assess risk factors for adverse events and to use appropriate supportive care for those patients who are at greatest risk.

Exercise manages fatigue during breast cancer treatment: a randomized controlled trial.

Fatigue is the most prevalent and debilitating symptom experienced by breast cancer patients receiving adjuvant chemotherapy or radiation therapy and few evidence-based treatments are available to manage this distressing side-effect. The purpose of this multi-institutional randomized controlled trial was to determine the effects of exercise on fatigue levels during treatment for breast cancer. Sedentary women (N=119) with Stage 0-III breast cancer receiving outpatient adjuvant chemotherapy or radiation therapy were randomized to a home-based moderate-intensity walking exercise program or to usual care for the duration of their cancer treatment. Of participants randomized to exercise, 72% adhered to the exercise prescription; 61% of the usual care group adhered. The intention-to-treat analysis revealed no group differences in part because of a dilution of treatment effect as 39% of the usual care group exercised and 28% of the exercise group did not. When exercise participation was considered using the data analysis method of instrumental variables with principal stratification, a clinically important and statistically significant (p=0.03) effect of exercise on pretest-to-posttest change in fatigue levels was demonstrated. Adherence to a home-based moderate-intensity walking exercise program may effectively mitigate the high levels of fatigue prevalent during cancer treatment.

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.

Adherence to moderate-intensity exercise during breast cancer therapy.

PURPOSE: The aims of this pilot study were the following: 1) to examine patterns of adherence to a brisk walking program in women receiving adjuvant chemotherapy or radiation therapy for newly diagnosed breast cancer using a prospective, randomized, controlled experimental design; 2) to examine the influence of disease symptoms and treatment side effects on exercise levels; and 3) to suggest methods that may improve future clinical trials of moderate-intensity exercise in similar populations. DESCRIPTION OF STUDY: Fifty-two patients with newly diagnosed breast cancer were randomly assigned to one of two treatment arms: usual care or usual care plus exercise. Those assigned to the exercise group received a standardized, self-administered, home-based brisk walking intervention in addition to usual care. Each day subjects completed self-report diary forms that elicited information about activity levels, and the occurrence of symptoms and side effects during cancer treatment. RESULTS: Analyses of self-reported daily activity levels revealed a diffusion of treatment effect. Fifty percent of the usual-care group reported maintaining or increasing their physical activity to a moderate-intensity level, while 33% of the exercise group did not exercise at the prescribed levels. Analyses of self-reported disease symptoms and treatment side effects did not reveal clinically meaningful differences between the two groups. CLINICAL IMPLICATIONS: The results of this study suggest that women who exercised regularly before receiving a breast cancer diagnosis attempted to maintain their exercise programs. Women who lead sedentary lifestyles may benefit from a structured exercise program that includes information and support related to exercise adherence strategies.