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Background: Nipple-areola tattoos can provide restoration of a natural looking breast that more closely resembles its pre-surgical appearance while avoiding additional surgeries. To date, the majority of nipple-areola tattoo procedures are performed by healthcare providers with minimal training in tattoo procedures. Substandard results explain the high rates of dissatisfaction among women who receive nipple-areola tattoos. In response, professional tattoo artists have emerged as an alternative provider for women seeking reconstruction. However, few studies have examined expectations and experiences of women undergoing nipple-areola tattoo procedures provided by a professional tattoo artist outside of the traditional healthcare setting. Methods: In-depth interviews were conducted with a racially/ethnically diverse group of 30 women who had undergone nipple-areola tattooing in the past 0-2 years. Interviews were conducted in English, Spanish, Chinese, and Arabic, recorded, and translated and transcribed into English for analysis. A team of three researchers conducted iterative reviews of the data which included closely reading each transcript, coding, running queries of codes, and developing summary documents to highlight recurrent concepts and patterns which were shared and discussed in group meetings. Results: Interview narratives addressed the often unexpected impact nipple-areola tattooing had on body image, self-esteem, emotional well-being, and interpersonal relationships. Women described their decision-making processes as weighing concern about the needle, the pain, and uncertainty about the tattoo artist, setting for the procedure, and outcome with the opportunity to return to a more “normal” appearance without further surgeries. Women discussed how their initial preconceptions of tattoos and tattoo parlors were ameliorated by the spa-like setting and the tattoo artist's anticipation of such concerns which enhanced her ability to put them at ease and provide professional and compassionate care. Participants noted the integral role the tattoo artist played in their positive experiences, describing her as both an “artist” and “caregiver.” The manner in which she guided them through the decision-making process regarding the color, size, shape, and placement of their nipple-areola tattoo was noted as particularly significant and empowering. Conclusions: Nipple-areola tattooing is an acceptable and meaningful reconstruction process for medically underserved public hospital patients. Our results indicate that women should be informed of nipple-areola tattooing as an alternative to more invasive, surgical reconstruction options. Results also illustrate how the healthcare system can extend beyond the traditional healthcare setting to include and leverage non-clinical and non-traditional specialists to provide appropriate care and positive breast health outcomes for women. In order to increase access and legitimacy to these services, additional research is needed to understand how to bring tattoo artists “in-house” (i.e., into the medical setting) and how to incorporate tattoo artists into breast health teams. Citation Format: Napoles TM, Guerra C, Orenstein F, Luce JA, Merritt S, Burke NJ. Healing art: Breast cancer survivor experiences with nipple-areola tattoo procedures during breast reconstruction [abstract]. In: Proceedings of the 2017 San Antonio Breast Cancer Symposium; 2017 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2018;78(4 Suppl):Abstract nr P6-12-19.

Background: The benefits of 3D nipple tattooing include restoration of a natural looking breast as well as the avoidance of additional surgeries to create a breast that more closely resembles its pre-surgical appearance. 3D nipple tattooing forms part of completion of the physical reconstruction process, offers women opportunity for a greater sense of closure around the loss of their breast, and plays an important role in helping a woman feel "whole again" physically, sexually and emotionally. The project's aim was to evaluate the experience of 3D-nipple/areola tattooing for medically underserved women who have undergone breast reconstruction and remain without a nipple or areola. Methods: In-depth interviews were conducted with 20 women who had undergone 3D-nipple/areola tattooing. Interviews were conducted in English and Spanish, recorded, translated and transcribed into English for analysis. Two research team members coded all interview transcripts and the research team met monthly to discuss emergent themes. Results: Interview narratives addressed the often unexpected impact 3D nipple-tattooing had on body image, self-esteem, emotional well-being, intimacy, and inter-personal relationships. Women described their decision-making processes as weighing concern about the needle, the pain, and the uncertainty of the outcome with the opportunity for returning to a more 'normal' appearance. Women also discussed the impact of the experience on their survivorship and sexuality in positive ways. Conclusions: 3-D nipple and/or areola tattooing is an acceptable and meaningful reconstruction process for medically underserved public hospital patients. The decision to undergo 3-D nipple and /or areola tattooing can be complex and is impacted by a women's surgical history and outcomes. The emotional response and positive impacts of the tattooing on body image and self-esteem illustrate the value of the procedure in the context of women's lives. Citation Format: Burke NJ, Orenstein F, Napoles T, Chaumette S, Luce J. Assessing the impact of post-surgery areola repigmentation and 3-dimensional nipple tattoo procedures on body image and quality of life among medically underserved breast cancer survivors. [abstract]. In: Proceedings of the Thirty-Eighth Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2015 Dec 8-12; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2016;76(4 Suppl):Abstract nr P2-13-11.

As genetics and genomics become part of mainstream medicine, these advances have the potential to either reduce or exacerbate health disparities. Relatively, little research has explored the quality of genetic counseling communication experienced by limited English proficiency patients, especially Chinese Americans. We observed and audio recorded genetic counseling appointments (n= 40) of low-income, limited English-proficient Chinese patients (n= 25) and conducted post-visit interviews (n= 17) using stimulated recall to examine patient understanding of the communication. Standard techniques based in grounded theory, including iterative data review and multiple coders, were used to analyze observation fieldnotes and interview transcripts and to identify these themes: (1) strong beliefs in environmental causes of cancer and skepticism about genetic causes, (2) willingness to undergo genetic testing despite skepticism of hereditary cause of cancer, (3) misunderstanding of key information needed to make informed decisions about testing and screening/prevention options, (4) variable quality of medical interpretation, and (5) selective family communication about cancer and genetic counseling and testing. Together, these themes describe substantial gaps in communication and identify the need for genetic counseling techniques and skills that enable counselors to communicate more effectively across language, literacy, and culture. Understanding the mechanisms of inheritance and the implications of genetic test results can be challenging for anyone, and it is exceptionally daunting for those who have limited English proficiency and/or low literacy. For Chinese immigrant patients to reap the full benefits of genetic counseling and testing, effective communication is essential. Research on interventions to improve communication is needed to ensure that disparities do not widen as genomic medicine reaches a more diverse population.

Objectives. We evaluated a community-based, translational stress management program to improve health-related quality of life in Spanish-speaking Latinas with breast cancer. Methods. We adapted a cognitive–behavioral stress management program integrating evidence-based and community best practices to address the needs of Latinas with breast cancer. Spanish-speaking Latinas with breast cancer were randomly assigned to an intervention or usual-care control group. Trained peers delivered the 8-week intervention between February 2011 and February 2014. Primary outcomes were breast cancer–specific quality of life and distress, and general symptoms of distress. Results. Of 151 participants, 95% were retained at 6 months (between May 2011 and May 2014). Improvements in quality of life from baseline to 6 months were greater for the intervention than the control group on physical well-being, emotional well-being, breast cancer concerns, and overall quality of life. Decreases from baseline to 6 months were greater for the intervention group on depression and somatization. Conclusions. Results suggest that translation of evidence-based programs can reduce psychosocial health disparities in Latinas with breast cancer. Integration of this program into community-based organizations enhances its dissemination potential.

The original version of this article unfortunately contained an error. The correction is shown below. In Table 4, the title of the first column reads, “Information Provided to Counselors.” This should read, “Information Provided by Counselors.”.

As genetics and genomics become part of mainstream Medicine, these advances have the potential to reduce or exacerbate health disparities. Gaps in effective communication (where all parties share the same meaning) are widely recognized as a major contributor to health disparities. The purpose of this study was to examine GC-patient communication in real time, to assess its effectiveness from the patient perspective, and then to pilot intervention strategies to improve the communication. We observed 64 English-, 35 Spanish- and 25 Chinese-speaking (n=124) public hospital patients and 10 GCs in 170 GC appointments, and interviewed 49 patients who were offered testing using the audio recordings to stimulate recall and probe specific aspects of the communication. Data analyses were conducted using grounded theory methods and revealed a fundamental mismatch between the information provided by GCs and the information desired and meaningful to patients. Several components of the communication that contributed to this mismatch and often resulted in ineffective communication included: (1) too much information; (2) complex terminology and conceptually difficult presentation of information; (3) information perceived as not relevant by the patient; (4) unintentional inhibition of patient engagement and question-asking; (5) vague discussions of screening and prevention recommendations. Our findings indicate a need to transform the standard model of genetic counseling communication using evidence-based principles and strategies from other fields of Medicine. The high rates of limited health literacy in the US, increasing access of diverse populations to genetic services, and growing complexity of genetic information have created a perfect storm. If not directly addressed, this convergence is likely to exacerbate health disparities in the genomic age.

Author(s): Napoles, Anna Maria; Ortiz, Carmen; Santoyo-Olsson, Jasmine; Stewart, Anita L; Lee, Howard E; Duron, Ysabel; Dixit, Niharika; Luce, Judith; Flores, Diana J | Abstract: BackgroundA comprehensive assessment of Spanish-speaking breast cancer survivors' (SSBCS) survivorship needs is lacking.ObjectiveAssess SSBCS' post-treatment symptom management, psychosocial, and informational needs.Methods118 telephone surveys and 25 in-person semi-structured interviews with SSBCS, and semi-structured interviews with 5 support providers and 4 physicians who serve SSBCS from 5 Northern California counties.ResultsSurveys identified the most bothersome (bothered by it in the past month "somewhat/quite a bit/a lot") physical symptoms as: joint pain, fatigue, hot flashes, numbness in hands/feet, and vaginal dryness. The most bothersome emotional symptoms were thoughts of recurrence/new cancers, depression/sadness, anxieties, and stress. Seven themes emerged from interviews: 1) unmet physical symptom management needs; 2) social support from family/friends often ends when treatment is completed; 3) challenges resuming roles; 5) sense of abandonment by health care system when treatment ends; 6) need for formal transition from active treatment to follow-up care; 6) fear of recurrence especially when obtaining follow-up care; and 7) desire for information on late effects of initial treatments and side effects of hormonal treatments. Based on survey and interview results, we present a conceptual framework for survivorship care interventions for SSBCS.LimitationsSample may not represent SSBCS' concerns seen outside of Northern California hospitals.ConclusionsPhysical and psychosocial symptoms were common. SSBCS need culturally appropriate survivorship care programs that address symptom management, psychosocial concerns, follow-up care, and healthy lifestyles.

Background. The optimal therapeutic approach for patients with AIDS-related primary central nervous system lymphoma (AR-PCNSL) remains undefined. While its incidence declined substantially with combination antiretroviral therapy (cART), AR-PCNSL remains a highly aggressive neoplasm for which whole brain radiotherapy (WBRT) is considered a standard first-line intervention. Methods. To identify therapy-related factors associated with favorable survival, we first retrospectively analyzed outcomes of AR-PCNSL patients treated at San Francisco General Hospital, a public hospital with a long history of dedicated care for patients with HIV and AIDS-related malignancies. Results were validated in a retrospective, multicenter analysis that evaluated all newly diagnosed patients with AR-PCNSL treated with cART plus high-dose methotrexate (HD-MTX). Results. We provide evidence that CD4+ reconstitution with cART administered during HD-MTX correlates with long-term survival among patients with CD4 Conclusion. Long-term disease-free survival can be achieved in AR-PCNSL, even among those with histories of opportunistic infections, limited access to health care, and medical non-adherence. Given this, as well as the long-term toxicities of WBRT, we recommend that integration of cART plus first-line HD-MTX be considered for all patients with AR-PCNSL.

UnlabelledPersistent pain following breast cancer surgery is well documented. However, it is not well characterized in terms of the anatomic site affected (ie, breast, arm). In 2 separate growth mixture modeling analyses, we identified subgroups of women (N=398) with distinct breast pain and arm pain trajectories. The fact that these latent classes differed by anatomic site, types of tissue affected, and neural innervation patterns suggests the need for separate evaluations of these distinct persistent pain conditions. The purposes of this companion study were to identify demographic and clinical characteristics that differed between the 2 arm pain classes and determine if differences existed over time in sensitivity in the upper inner arm and axillary lymph node dissection sites, pain qualities, pain interference, and hand and arm function, as well as to compare findings with persistent breast pain. Higher occurrence rates for depression and lymphedema were found in the moderate arm pain class. Regardless of pain group membership, sensory loss was observed in the upper inner arm and axillary lymph node dissection site. Arm pain was described similarly to neuropathic pain and interfered with daily functioning. Persistent arm pain was associated with sustained impairments in shoulder mobility.PerspectiveFor persistent breast and arm pain, changes in sensation following breast cancer surgery were notable. Persistent arm pain was associated with sustained interference with daily functioning and upper body mobility impairments. Long-term management of persistent pain following breast cancer surgery is warranted to improve the quality of survivorship for these women.

Outcomes aft er genetic testing for Hereditary Breast and Ovarian Cancer (HBOC) Syndrome have not been well studied in underserved populations. We surveyed 1,123 BRCA testers from a genetic counseling program serving an academic cancer center (n=1,045) and a public county hospital (n=78) a median of 3.7 years aft er testing for mutations in BRCA1 and BRCA2 (breast cancer susceptibility genes). We compared genetic counseling outcomes, cancer screening rates, and self- reported general health. We found no differences in genetic counseling outcomes between hospitals. Breast cancer screening rates were similarly high at both hospitals, which are warranted in this high- risk population. Screening rates for ovarian, colon, and skin cancer were significantly lower in participants from the public hospital. BRCA results were not a predictor of general health at either hospital. When creating a genetic counseling program that serves women in different hospital settings, providers should emphasize guidelines- based screening recommendations for all patients. © Meharry Medical College.

Objectives. To determine the effectiveness of a statewide telephone service in identifying low-income women at risk for hereditary breast and ovarian cancer and referring them to free genetic counseling. Methods. From June 2010 through August 2011, eligible callers to California’s toll-free breast and cervical cancer telephone service were screened for their family histories of breast and ovarian cancer. High-risk women were identified and called for a baseline survey and randomization to an immediate offer of genetic counseling or a mailed brochure on how to obtain counseling. Clinic records were used to assess receipt of genetic counseling after 2 months. Results. Among 1212 eligible callers, 709 (58.5%) agreed to answer family history questions; 102 (14%) were at high risk (25% Hispanic, 46% White, 10% Black, 16% Asian, 3% of other racial/ethnic backgrounds). Of the high-risk women offered an immediate appointment, 39% received counseling during the intervention period, as compared with 4.5% of those receiving the brochure. Conclusions. A public health approach to the rare but serious risk of hereditary breast and ovarian cancer can be successful when integrated into the efforts of existing safety net organizations.

Background: Identification of low-income women with the rare but serious risk of hereditary cancer and their referral to appropriate services presents an important public health challenge. We report the results of formative research to reach thousands of women for efficient identification of those at high risk and expedient access to free genetic services. External validity is maximized by emphasizing intervention fit with the two end-user organizations who must connect to make this possible. This study phase informed the design of a subsequent randomized controlled trial. Methods: We conducted a randomized controlled pilot study (n = 38) to compare two intervention models for feasibility and impact. The main outcome was receipt of genetic counseling during a two-month intervention period. Model 1 was based on the usual outcall protocol of an academic hospital genetic risk program, and Model 2 drew on the screening and referral procedures of a statewide toll-free phone line through which large numbers of high-risk women can be identified. In Model 1, the risk program proactively calls patients to schedule genetic counseling; for Model 2, women are notified of their eligibility for counseling and make the call themselves. We also developed and pretested a family history screener for administration by phone to identify women appropriate for genetic counseling. Results: There was no statistically significant difference in receipt of genetic counseling between women randomized to Model 1 (3/18) compared with Model 2 (3/20) during the intervention period. However, when unresponsive women in Model 2 were called after 2 months, 7 more obtained counseling; 4 women from Model 1 were also counseled after the intervention. Thus, the intervention model that closely aligned with the risk program’s outcall to high-risk women was found to be feasible and brought more low-income women to free genetic counseling. Our screener was easy to administer by phone and appeared to identify high-risk callers effectively. The model and screener are now in use in the main trial to test the effectiveness of this screening and referral intervention. A validation analysis of the screener is also underway. Conclusion: Identification of intervention strategies and tools, and their systematic comparison for impact and efficiency in the context where they will ultimately be used are critical elements of practice-based research.

Background: Underserved women at risk for Hereditary Breast and Ovarian Cancer (HBOC) are confronted with many unique challenges, such as barriers to accessing appropriate genetic testing and counseling services and decreased resources, that place them at increased cancer risk. It is unclear whether these high-risk women are appropriately referred for genetic counseling and what their genetic test results demonstrate due to minimal practice-based evidence. To study this population, and to establish an infrastructure to further explore long-term outcomes, we formed the Consortium of Underserved BRCA testers in October 2010 from: San Francisco General Hospital (SF), Stroger Hospital of Cook County (Chicago), and Grady Memorial Hospital (Atlanta). Methods: Using common clinical and research protocols and mixed methods analysis, we examined and compared referral patterns, demographics, and BRCA test results between sites. We used chart reviews and common data collection instruments to gather and pool data. Using descriptive and comparative statistics, we examined similarities and differences between Consortium sites. Results: SF's program began 9 years ago, Chicago's began 6 years ago, and Atlanta's began 3 years ago. Medicaid funding for BRCA testing has been available in SF since 2011, in Chicago since 2009, and is not yet available in Atlanta. P values were all Conclusions: Despite differences in referral patterns and Medicaid funding, underserved women at all 3 public hospital sites had similar BRCA positive rates, which are in line with positive rates from University Cancer Centers. We believe this relates to the availability of genetic counseling services and a similar testing threshold at each site. The large and ethnically diverse population of this Consortium can serve as a valuable resource for researchers and clinicians. We plan to follow this cohort prospectively to study clinical outcomes and medical decisions after BRCA testing in underserved families at risk of HBOC. Citation Information: Cancer Res 2011;71(24 Suppl):Abstract nr P2-13-03.

Objective: To report on the effect of the Breast and Cervical Cancer Intervention Study (BACCIS), a multicomponent intervention conducted in the San Francisco Bay Area between 1992 and 1997. Methods: BACCIS targeted ∼25,000 multiethnic, underserved women in eight neighborhoods and the public health clinics that served them. An outreach intervention using lay health worker peers and clinic provider inreach intervention to improve breast and cervical cancer screening were evaluated in a quasi-experimental, controlled trial with pretest and posttest household surveys of 1,599 and 1,616 women, respectively. Surveys were conducted in English, Spanish, Mandarin, and Cantonese. Results: Analyses of community survey results showed no significant improvement in reported screening behaviors. Reports of mammography in the intervention areas in the previous 2 years, or for Pap smear in the previous 3 years, did not differ significantly (73-71% and 84-87%, respectively, for pretest and posttest surveys). Conclusion: High baseline screening rates, lack of sensitive measures of change at the population level, contamination of the control group, and an imbalance of predictive factors at baseline contributed to the difficulty of assessing the value of the intervention. Lessons learned from this inconclusive study may be of value to future community intervention studies of cancer screening and other health behaviors in multiethnic underserved urban populations. (Cancer Epidemiol Biomarkers Prev 2008;17(8):1945–9)

Today, the 5-year relative survival rate for cancer is 65% and there are 10.5 million survivors. The largest group of survivors are those of breast cancer. Reductions in mortality are occurring at a greater rate for women under age 50 at diagnosis than among older women.Our goal was to design a socio-educational intervention for 5-year survivors aged 50 or younger at diagnosis and test the hypotheses that women in the intervention group would show greater improvement than controls with respect to (1) knowledge of breast cancer, its treatment, and long-term health concerns; (2) lifestyle habits (i.e., exercise and diet); and (3) communication with family and physicians.Using a randomized controlled trial with a pre-post design, 404 women who were 5 years from diagnosis and cancer-free (response rate 54%) were randomly assigned to an intervention or delayed intervention (control) group and were assessed at pre-test (baseline) and 6 months later (96% retention). The intervention consisted of three 6-h workshops over a 3 month period. Four series of workshops were held at different geographical areas in the greater San Francisco Bay Area. The workshops included activities and information to promote physical, social, emotional, and spiritual well-being. The intervention design was based on findings from focus groups and a survey of 185 cancer-free 5-year survivors that assessed changes since the early months after diagnosis in physical, social, emotional, and spiritual concerns (response rate 73%).Consistent with our first hypothesis, at post-test, women in the intervention group, on average, had greater knowledge regarding breast cancer, its treatment, and their own future health than did those in the control group (p = 0.015). Hypothesis 2 was partially supported as women in the intervention group were more likely than the control group to report an increased amount of physical activity (p = 0.036), but not significant dietary changes. Social support was related to increased self report of physical activity. With the exception of the last series of workshops, the intervention group did not report improved communications with family, friends, and physicians (hypothesis 3).A short-term intervention can affect knowledge levels and physical activity but not diet or communication in the family.The intervention was related to greater knowledge related to breast cancer, and increased report of physical activity. The program was not related to changes in reported diet or family communication.

Genetic counseling for BRCA1 and BRCA2 mutations involves teaching about hereditary cancer, genetics and risk, subjects that are difficult to grasp and are routinely misunderstood. Supported by a grant from the Avon Foundation, the UCSF Cancer Risk Program started the first genetic testing and counseling service for a population of traditionally underserved women of varied ethnic and social backgrounds at the San Francisco General Hospital (SFGH). Informed by educational theory and clinical experience, we devised and piloted two simplified explanations of heredity and genetic risk, with the aim of uncovering how to best communicate genetics and risk to this underserved population. A "conventional" version comprised pictures of genes, pedigrees, and quantitative representations of risk. A "colloquial" pictorial version used an analogy of the "information book" of genes, family stories and vignettes, and visual representations of risk, without using scientific words such as genes or chromosomes. A verbal narrative accompanied each picture. We presented these modules to four focus groups of five to eight women recruited from the SFGH Family Practice Clinic. Overall, women preferred a picture-based approach and commented that additional text would have been distracting. The majority of women preferred the colloquial version because it was easier to understand and better conveyed a sense of comfort and hope. We conclude that simplicity, analogies, and familiarity support comprehension while vignettes, family stories, and photos of real people provide comfort and hope. These elements may promote understanding of complex scientific topics in healthcare, particularly when communicating with patients who come from disadvantaged backgrounds.

The purposes of this study, in oncology outpatients receiving chemotherapy (CTX, n=926), were to: describe the occurrence of different types of pain (i.e., no pain, only non-cancer pain (NCP), only cancer pain (CP), or both CP and NCP) and evaluate for differences in demographic, clinical, and symptom characteristics, and quality of life (QOL) among the four groups. Patients completed self-report questionnaires on demographic and symptom characteristics and QOL. Patients who had pain were asked to indicate if it was or was not related to their cancer or its treatment. Medical records were reviewed for information on cancer and its treatments. In this study, 72.5% of the patients reported pain. Of the 671 who reported pain, 21.5% reported only NCP, 37.0% only CP, and 41.5% both CP and NCP. Across the three pain groups, worst pain scores were in the moderate to severe range. Compared to the no pain group, patients with both CP and NCP were significantly younger, more likely to be female, have a higher level of comorbidity and a poorer functional status. In addition, these patients reported: higher levels of depression, anxiety, fatigue, and sleep disturbance; lower levels of energy and attentional function; and poorer QOL. Patients with only NCP were significantly older than the other three groups. The most common comorbidities in the NCP group were back pain, hypertension, osteoarthritis, and depression. Unrelieved CP and NCP continue to be significant problems. Oncology outpatients need to be assessed for both CP and NCP conditions.

Use of mobile health (mHealth) tools has expanded rapidly but little research has been done on its acceptability by low-income, diverse, older patient populations.To assess the attitudes of a diverse group of underserved women on the acceptability and usability of mHealth tools in a clinical setting using a breast health questionnaire application (app) at a public hospital mammography clinic.Semi-structured interviews were conducted in a breast-imaging center of an urban safety net institution from July-August 2012. Interviews included pre- and post-questions. Women completed the Athena breast health questionnaire app on an iPad and were asked about their experience and ways to improve the tool.Fifteen women age 45-79 years from diverse ethnic and educational backgrounds were interviewed. The majority of women, 11 of 15, preferred the Athena app over a paper version and all the women thought the app was easy to use. Two Spanish-speaking Latinas preferred paper; and two women, with limited mobile phone use, did not have a preference. Many women indicated that it would be necessary to have staff available for instruction and assistance if the app were to be implemented.mHealth tools are an acceptable, if not preferred, method of collecting health information for diverse, older, low-income women. Further studies are required to evaluate the reliability and accuracy of data collection using mHealth tools in underserved populations. mHealth tools should be explored as a novel way to engage diverse populations to improve clinical care and bridge gaps in health disparities.

PURPOSE/OBJECTIVES: To describe the experience and intensity of delayed nausea in women undergoing chemotherapy for breast cancer since the advent of the 5-HT3 antagonists. DESIGN: Multisite, longitudinal, descriptive. SETTING: 7 outpatient oncology clinics situated in hospitals, 5 outpatient oncology clinics associated with major teaching universities, 27 private outpatient oncology practices, and 1 outpatient clinic located in a county hospital. SAMPLE: Typical participants (N = 303) were 51.9 years old, Caucasian (79%), married or partnered (65%), born U.S. citizens (92%), heterosexual (96%), living with someone (83%), and high school graduates (82%). METHODS: Baseline and poststudy questionnaires plus a daily diary of nausea through two cycles of chemotherapy (approximately two months) were used to collect data. The Rhodes Inventory of Nausea, Vomiting, and Retching was used to assess the nausea experience. MAIN RESEARCH VARIABLES: Nausea. FINDINGS: The worst nausea occurred on the third day after having chemotherapy for breast cancer. The types of oral antiemetics ordered for home use were changed between the two cycles of the study only 8% (n = 24) of the time. Younger, heavier women experienced more delayed nausea. Women who had a history of nausea with stress and women receiving cyclophosphamide experienced more delayed nausea during both time periods. CONCLUSIONS: Delayed nausea is a significant problem for women receiving chemotherapy for breast cancer. IMPLICATION FOR NURSING: Oncology nurses can use the results from this study to provide anticipatory guidance for patients undergoing chemotherapy for breast cancer.

As genetics and genomics become part of mainstream Medicine, these advances have the potential to reduce or exacerbate health disparities. Gaps in effective communication (where all parties share the same meaning) are widely recognized as a major contributor to health disparities. The purpose of this study was to examine cancer genetic counselor-patient communication, to assess its effectiveness from the patient perspective, and to pilot intervention strategies to improve it. We used multiple inductive methods, including standard ethnographic techniques to systematically observe and audio-record genetic counseling sessions, and qualitative interviews with observed patients using the audio recordings to stimulate recall and probe specific aspects of the communication. Data analyses were conducted using grounded theory. We observed 64 English-, 35 Spanish- and 25 Cantonese- speaking public hospital patients (n = 124) and 10 Genetic Counselors in 170 appointments, and interviewed 49 patients who had been offered testing. We identified a fundamental mismatch between the information provided by genetic counselors and the information desired and meaningful to patients. Several components of the communication that contributed to this mismatch and often resulted in ineffective communication included: (1) too much information; (2) complex terminology and conceptually difficult presentation of information; (3) information perceived as not relevant by the patient; (4) unintentional inhibition of patient engagement and question-asking; (5) vague discussions of screening and prevention recommendations. To address these communication barriers, we adapted from other fields of Medicine to the genetic counseling context and pilot tested evidence-based strategies for effective communication with limited literacy patients. Our findings indicate a need to transform the standard model of hereditary cancer risk communication. The increasing access of diverse populations to genetic services, high rates of limited health literacy in the US, and growing complexity of genetic information have created a perfect storm. If not directly addressed, this convergence can be expected to exacerbate health disparities in the genomic age.

Purpose In this prospective, longitudinal study, we extend our findings on persistent breast pain in patients ( n = 398) following breast cancer surgery and evaluate the prevalence and characteristics of persistent pain in the arm/shoulder. In addition, differences in the severity of common symptoms and quality of life outcomes measured prior to surgery, among the arm pain classes, were evaluated. Methods and sample Patients were recruited from Breast Care Centers located in a Comprehensive Cancer Center, two public hospitals, and four community practices. Patients were assessed prior to and monthly for six months following breast cancer surgery. Results Using growth mixture modeling, patients were classified into no (41.6%), mild (23.6%), and moderate (34.8%) arm pain classes based on ratings of worst arm/shoulder pain. Compared to the no pain class, patients in the moderate pain class were significantly younger, had a higher body mass index, and were more likely to report preoperative breast pain and swelling in the affected breast. In addition, patients in the moderate pain class reported higher levels of depression, anxiety, and sleep disturbance than the no pain class. Conclusions Findings suggest that approximately 35% of women experience persistent levels of moderate arm/shoulder pain in the first six months following breast cancer surgery. Moderate arm/shoulder pain is associated with clinically meaningful decrements in functional status and quality of life.

Background Latinas with breast cancer suffer symptom and psychosocial health disparities. Effective interventions have not been developed for or tested in this population. Purpose We describe community-based participatory research methods used to develop and implement the Nuevo Amanecer program, a culturally tailored, peer-delivered cognitive-behavioral stress management intervention for low-income Spanish-speaking Latinas with breast cancer, and unique considerations in implementing a randomized controlled trial to test the program in community settings. Methods We applied an implementation science framework to delineate the methodological phases used to develop and implement the Nuevo Amanecer program and trial, emphasizing community engagement processes. Results In phase 1, we established project infrastructure: academic and community co-principal investigators, community partners, community advisory board, steering committee, and funding. In phase 2, we identified three program inputs: formative research, a community best-practices model, and an evidence-based intervention tested in non-Latinas. In phase 3, we created the new program by integrating and adapting intervention components from the three sources, making adaptations to accommodate low literacy, Spanish language, cultural factors, community context, and population needs. In phase 4, we built community capacity for the program and trial by training field staff (recruiters and interventionists embedded in community sites), compensating field staff, and creating a system for identifying potential participants. In phase 5, we implemented and monitored the program and trial. Engaging community partners in all phases has resulted in a new, culturally tailored program that is suitable for newly diagnosed Latinas with breast cancer and a trial that is acceptable and supported by community and clinical partners. Lessons learned Engagement of community-based organizations and cancer survivors as research partners and hiring recruiters and interventionists from the community were critical to successful implementation in community settings. Having culturally and linguistically competent research staff with excellent interpersonal skills facilitated implementation. Facilitating and maintaining excellent communication among community partners was imperative to troubleshoot implementation issues. Randomization was challenging due to community concerns about assigning women to a control group. Patient privacy regulations and the need for extensive outreach to establish relationships between community partners and clinical sites hampered initial recruitment. Limitations These were resource-intensive processes to develop and implement the program that need to be compared to less-intensive alternatives. Conclusion Engaging community members in design and implementation of community-based programs and trials enhances cultural appropriateness and congruence with the community context. If the randomized trial demonstrates that the intervention is effective, it will fill a gap in evidence-based programs to address ethnic disparities in quality of life among Spanish-speaking Latinas with breast cancer.

Persistent pain following breast cancer surgery is a significant clinical problem. Although immune mechanisms may play a role in the development and maintenance of persistent pain, few studies have evaluated for associations between persistent breast pain following breast cancer surgery and variations in cytokine genes. In this study, associations between previously identified extreme persistent breast pain phenotypes (ie, no pain vs severe pain) and single nucleotide polymorphisms (SNPs) spanning 15 cytokine genes were evaluated. In unadjusted analyses, the frequency of 13 SNPs and 3 haplotypes in 7 genes differed significantly between the no pain and severe pain classes. After adjustment for preoperative breast pain and the severity of average postoperative pain, 1 SNP (ie, interleukin [IL] 1 receptor 2 rs11674595) and 1 haplotype (ie, IL10 haplotype A8) were associated with pain group membership. These findings suggest a role for cytokine gene polymorphisms in the development of persistent breast pain following breast cancer surgery. Perspective This study evaluated for associations between cytokine gene variations and the severity of persistent breast pain in women following breast cancer surgery. Variations in 2 cytokine genes were associated with severe breast pain. The results suggest that cytokines play a role in the development of persistent postsurgical pain.

Background. Underutilization of breast and cervical cancer screening has been observed in many ethnic groups and underserved populations. Effective community-based interventions are needed to eliminate disparities in screening rates and thus to improve prospects for survival. Methods. The Breast and Cervical Cancer Intervention Study was a controlled trial of three interventions in the San Francisco Bay Area from 1993 to 1996: (1) community-based lay health worker outreach; (2) clinic-based provider training and reminder system; and (3) patient navigator for follow-up of abnormal screening results. Study design and a description of the interventions are reported along with baseline results of a household survey conducted in four languages among 1599 women, aged 40–75. Results. Seventy-six percent of women ages 40 and over had had at least one mammogram, and most had had a clinical breast examination (88%) and Pap smear (89%). Rates were significantly lower for non-English-speaking Latinas and Chinese women (56 and 32%, respectively, for mammography), and maintenance screening (three mammograms in the past 5 years) varied from 7% (non-English-speaking Chinese) to 53% (Blacks). Pap smear screening in the past 3 years was low among non-English-speaking Latinas (72%) and markedly lower among non-English-speaking Chinese women (24%). The strongest predictors of screening behavior were having private health insurance and frequent use of medical services. Having a regular clinic and speaking English were also important. Race/ethnicity, education, household income, and employment status were, overall, not significant predictors of screening behavior. Conclusions. These baseline results support the importance of cancer screening interventions targeted to persons of foreign origin, particularly those less acculturated.

This study compared an ethnically mixed population of lower socioeconomic status women regarding their breast cancer beliefs, surgical decision making, sources of information, reactions to the diagnosis, and use of support groups. A 20-item oral survey was administered to a convenience sample recruited at the San Francisco General Hospital breast clinic during 1997. Data were analyzed by chi-square analysis with stratification according to age, ethnicity, education, and language. Corrections were made for small frequencies. P values of less than 0.05 were considered significant. The mean age (n = 30) was 56 years (range 39-72 years). Ten participants were African American, 7 Caucasian, 6 Filipino, 4 Chinese, and 3 Latina. Education averaged 12 years. Ten were non-English speakers. Breast cancer beliefs varied by ethnicity, age, and education. Surgical decision making showed that less formally educated women tended to include the doctor in decision making more often. Sources of information varied by English language capacity. Reactions to the diagnosis and use of support groups showed no difference among the categories. Some results of this study corroborate reports of breast cancer beliefs and decision-making styles published in the literature. Differences noted in the study may be explained in part by socioeconomic and ethnic differences between our population and those commonly sampled in the literature. These results suggest the need for further research in multiethnic and low-income populations with breast cancer. They also suggest some important implications for understanding community educational needs.

Author(s): Burke, Nancy J; Napoles, Tessa M; Banks, Priscilla J; Orenstein, Fern S; Luce, Judith A; Joseph, Galen | Abstract: PurposeDespite the Institute of Medicine's (IOM) 2005 recommendation, few care organizations have instituted standard survivorship care plans (SCPs). Low health literacy and low English proficiency are important factors to consider in SCP development. Our study aimed to identify information needs and survivorship care plan preferences of low literacy, multi-lingual patients to support the transition from oncology to primary care and ongoing learning in survivorship.MethodsWe conducted focus groups in five languages with African American, Latina, Russian, Filipina, White, and Chinese medically underserved breast cancer patients. Topics explored included the transition to primary care, access to information, knowledge of treatment history, and perspectives on SCPs.ResultsAnalysis of focus group data identified three themes: 1) the need for information and education on the transition between "active treatment" and "survivorship"; 2) information needed (and often not obtained) from providers; and 3) perspectives on SCP content and delivery.ConclusionsOur data point to the need to develop a process as well as written information for medically underserved breast cancer patients. An SCP document will not replace direct communication with providers about treatment, symptom management and transition, a communication that is missing in participating safety-net patients' experiences of cancer care. Women turned to peer support and community-based organizations in the absence of information from providers.Implications for cancer survivors"Clear and effective" communication of survivorship care for safety-net patients requires dedicated staff trained to address wide-ranging information needs and uncertainties.

The combination of leucovorin [(6d,l)-5-formyl-tetrahydrofolate] and 5-fluorouracil (5-FU) has increased efficacy compared to 5-FU alone as treatment of advanced colorectal cancer. Leucovorin is metabolized to methylene tetrahydrofolate, which potentiates the antitumor actions of 5-FU by forming a ternary complex of thymidylate synthase, fluorodeoxyuridine and methylene tetrahydrofolate. Only l-leucovorin is metabolized to methylene tetrahydrofolate and forms this ternary complex. However, d-leucovorin may not be inert. d-Leucovorin may impair cellular uptake and metabolism of l-leucovorin, thereby inhibiting the actions of l-leucovorin. Because of this possible limitation to the effectiveness of racemic leucovorin, we have begun to explore the effects of the pure, biologically active isomer, l-leucovorin. In this phase I trial, patients with advanced gastrointestinal malignancies were treated with a 5-day continuous infusion of l-leucovorin and daily intravenous boluses of 5-FU at 370 mg/m2. The dose of l-leucovorin was escalated in groups of three patients at four doses, 200 mg/m2 per day, 400 mg/m2 per day, 700 mg/m2 per day and 1000 mg/m2 per day. Treatment was repeated every 28 days. Seventeen patients with advanced gastrointestinal cancers entered the trial. Sixteen patients were evaluable for toxicity. Toxicity was similar to that expected for leucovorin plus 5-FU. The most common severe toxicities (and the number of patents affected) were: diarrhea (2), mucositis (2), nausea/vomiting (1), and abdominal/rectal pain (2). The maximum tolerated dose of l-leucovorin was 700 mg/m2 per day. Twelve patients were evaluable for response. One complete, one partial and one minor response were observed. All responses occurred among the nine patients with colorectal carcinomas. The combination of l-leucovorin and 5-FU is well tolerated by patients and appears active for treatment of advanced colorectal carcinomas. Additional clinical trials are necessary to determine if l-leucovorin is more effective than d,l-leucovorin for modulating the effectiveness of 5-FU.

The Cancer Risk Education Intervention Tool (CREdIT) is a computer-based (non-interactive) slide presentation designed to educate low-literacy, and ethnically and racially diverse public hospital patients at risk of Hereditary Breast and Ovarian Cancer (HBOC) about genetics. To qualitatively evaluate participants' experience with and perceptions of a genetic education program as an adjunct to genetic counseling, we conducted direct observations of the intervention, semi-structured in person interviews with 11 women who viewed CREdIT, and post-counseling questionnaires with the two participating genetic counselors. Five themes emerged from the analysis of interviews: (1) genetic counseling and testing for breast/ ovarian cancer was a new concept; (2) CREdIT's story format was particularly appealing; (3) changes in participants' perceived risk for breast cancer varied; (4) some misunderstandings about individual risk and heredity persisted after CREdIT and counseling; (5) the context for viewing CREdIT shaped responses to the presentation. Observations demonstrated ways to make the information provided in CREdIT and by genetic counselors more consistent. In a post-session counselor questionnaire, counselors' rating of the patient's preparedness before the session was significantly higher for patients who viewed CREdIT prior to their appointments than for other patients. This novel educational tool fills a gap in HBOC education by tailoring information to women of lower literacy and diverse ethnic/racial backgrounds. The tool was well received by interview participants and counselors alike. Further study is needed to examine the varied effects of CREdIT on risk perception. In addition, the implementation of CREdIT in diverse clinical settings and the cultural adaptation of CREdIT to specific populations reflect important areas for future work. © National Society of Genetic Counselors, Inc. 2010.

The feasibility and efficacy of treating patients with locally recurrent or metastatic non-small cell lung cancer (NSCLC) or head/neck cancer with interleukin-2 (IL-2), cisplatin, and 5-fluorouracil (5-FU) was tested. Treatment was given every 28 days and consisted of cisplatin, 100 mg/m2 on days 1 and 8; 5-FU, 1,000 mg/m2 by continuous infusion on days 1-3; and IL-2, 12 million units/m2 by i.v. bolus on days 15-19. Thirty-four patients (22 NSCLC, 12 head/neck cancer) were registered in the study. The median age was 58 years; 59% had Karnofsky performance status of 70-80% and over one-half received prior therapy. All patients were evaluable for toxicity and 29 (18 NSCLC, 11 head/neck cancer) were evaluable for response. Twenty-five patients experienced at least one grade 3 or 4 toxicity, but these toxicities were transient and, in general, well tolerated. The response rate was 37% for NSCLC (0 complete response, 7 partial response) and 55% for head/neck cancer (2 complete response, 4 partial response). Two patients with head/neck cancer responded to treatment after failing prior therapy with cisplatin/5-FU alone. The combination of IL-2, cisplatin, and 5-FU is tolerable and active for treatment of NSCLC and head/neck carcinoma; the combination may not be cross-resistant with other chemotherapy combinations. Further studies of IL-2 combined with cisplatin/5-FU are warranted to determine the most effective dose and schedule.

PURPOSE/OBJECTIVES To describe the incidence and intensity of vomiting in women receiving chemotherapy treatment for breast cancer since the advent of 5-HT3 antagonists. DESIGN Longitudinal, descriptive. SETTING 7 outpatient oncology clinics situated in hospitals, 5 outpatient oncology clinics associated with major teaching universities, 27 private outpatient oncology practices, and 1 outpatient clinic located in a county hospital. SAMPLE Typical participants (N = 303) were 51.9 years, Caucasian (79%), married or partnered (65%), born U.S. citizens (93%), heterosexual (96%), living with someone (84%), and high school graduates (82%). METHODS Baseline and poststudy questionnaires and a daily diary of vomiting through two cycles of chemotherapy (approximately two months) were used to collect data. MAIN RESEARCH VARIABLE Vomiting experience. FINDINGS The worst vomiting occurs three days after having chemotherapy for breast cancer. The types of oral antiemetics ordered for home use were changed between the two cycles of the study only 8% (n = 24) of the time. No demographic factors were associated with acute vomiting at times 1 or 2; younger age (r = -0.16; p = 0.012) was associated with more vomiting. Delayed vomiting was associated with age and body mass index, and younger, heavier women experienced more vomiting. Minority women (n = 55) reported significantly more delayed vomiting than did Caucasian women (mean = 6.56 versus 2.82; t = 2.02; p less than 0.05). CONCLUSIONS Vomiting continues to be a significant problem for some women receiving chemotherapy for breast cancer. IMPLICATIONS FOR NURSING Oncology nurses can use the results from this study to provide anticipatory guidance for patients undergoing chemotherapy for breast cancer and to support efforts to provide appropriate symptom management for these women.

Primary malignant lymphomatous effusions arising in individuals infected with the human immunodeficiency virus, type 1 (HIV-1) represent a rare subset of HIV-associated lymphomas. Previous studies have demonstrated that the malignant cells are monoclonal (as defined by rearrangement of the immunoglobulin gene), express cell surface CD38, and are infected with Epstein-Barr virus (EBV) and human herpes virus, type 8 (HHV-8). Despite these detailed molecular and immunophenotypic studies, clinical information on this disease entity is scant, prompting us to review the clinical features of eight cases seen at our institutions. All eight patients had total peripheral CD4+ lymphocytes < 200/microliter and presented with complaints related to body cavity distension. Routine laboratory values were nondiagnostic and yielded no prognostic information. Only two patients could tolerate and thus received chemotherapy with no obvious impact on their clinical course. The mean overall survival after diagnosis was 60 days (range 6-166 days). Four patients were examined at autopsy. The primary malignant lymphomatous effusion either was the immediate cause of death or contributed significantly to the death of only two. All four patients examined post mortem, however, had lymphomatous infiltration of serosal surfaces adjacent to the site of the primary malignant effusion. Molecular and immunologic studies performed on the malignant cells and effusion fluids revealed universal expression of cell surface CD38 and the presence of HHV-8 gene sequences, but in contrast with previous studies, only four had rearranged immunoglobulin genes or EBV present: IL-6 and IL-10 levels in the malignant effusion fluids were markedly elevated. In summary, this rare subset of HIV-associated lymphomas in our eight patients arose late in the course of HIV-associated disease, had a rapid clinical course, and was molecularly heterogeneous. A pathogenetic role for HHV-8 alone in this disease process is strengthened by our observation of four cases lacking EBV but containing HHV-8.

OBJECTIVE: To determine whether physicians followed a hospital policy permitting them to not offer cardiopulmonary resuscitation (CPR) to patients considered unlikely to benefit from this therapy. DESIGN: Prospective series. SETTING: San Francisco General Hospital, a university-affiliated public hospital. PATIENTS: Attending physicians were interviewed about patients admitted over a period of 5 consecutive months for whom do-not resuscitate (DNR) orders were written. Only the first patient for whom each physician wrote a DNR order was included. MAIN OUTCOME MEASURES: Responses of physicians to questions regarding their initiation of DNR orders for these patients. RESULTS: Sixty-nine physicians responded to questions about DNR orders written for 69 patients. Fifty-seven of these physicians said that they were aware of the hospital policy, and 49 of the 57 physicians said that they generally agreed with it. Thirty-three physicians felt that CPR should be offered only to patients likely to benefit from it. In contrast, 36 physicians said that CPR should be offered to all patients, regardless of benefit. CPR was offered to 41 patients and 15 surrogates; 27 of these patients were considered to be unlikely to benefit from CPR. CONCLUSION: Despite a policy that allows them to do otherwise, physicians usually offered CPR to patients, regardless of benefit. Most physicians believed that CPR should be offered to all patients. These findings suggest that policies such as that of San Francisco General Hospital may not be compelling because physicians hold attitudes that are inconsistent with the policies.

Introduction: Mobile health (mHealth) tools may offer an opportunity for breast cancer screening and prevention especially among minority populations who are known to access the internet at higher rates with mobile devices. However, the use of mHealth applications (apps) has not been well studied in older, low-income, minority populations. This study sought to determine the usability of an mHealth Breast Health Risk Assessment Questionnaire app for older, low-income women. Methods: We performed fifteen semi-structured interviews of women with diverse backgrounds who used the Athena Breast Health Questionnaire iPad app, which was available in Spanish and English. The app was developed by the Athena Breast Health Network, a breast cancer screening collaboration of the five University of California medical centers. Women were recruited during their screening mammography visit at the San Francisco General Hospital Avon Mammography Center. Results: Fifteen women were interviewed; five Hispanic, five non-Hispanic white, three African American and two Filipina women. Four women were Spanish speaking only. The median age of women was 61 (range, 45-79). The women's level of education ranged from third grade to graduate school. Fourteen women owned a mobile phone, three owned a smart phone, and three had previously used an iPad. The average time to complete the questionnaire for all women was 16.4 minutes (range, 6.6-35 minutes). The subgroup of Spanish speaking women took longer, averaging 24.5 minutes. The majority of women needed initial instruction regarding scrolling and free text entry. All fifteen women interviewed thought the Athena Breast Health Questionnaire app was easy or very easy to use. Eleven women preferred answering the iPad questionnaire compared to the pen-and-paper form previously completed for their mammogram. Two women preferred pen-and-paper, both Spanish speaking; and two women had no preference, including one who started using a mobile phone within the past month and another woman who did not own one. Three of the four women who did not prefer the app had lower than a tenth grade education. All four that did not prefer the app were concerned that a clinic would not be able to offer the initial instruction needed or to provide assistance for questions though they thought the app was easy to use. Conclusion: Older, low-income, minority women easily used a mHealth app to answer a breast health risk assessment questionnaire. Particular formats of questions, such as the use of scrolling, were initially difficult but participants easily overcame such difficulties and learned the skills of using a touchscreen. Spanish speaking women had a lower preference for the app, but this finding may be confounded with education level. Further evaluation of the validity of women's responses using the app in a clinical setting is needed. Citation Format: Cristina M. Thorsen, Celia P. Kaplan, Natasha Brasic, Laura J. Esserman, Judith A. Luce, Rebecca Howe, Laura J. van 't Veer, Carolina Bravo, Alyse Wheelock, Elissa M. Ozanne, . Athena Breast Health Network Investigators. Can “mHealth” improve risk assessment? A usability study of older, low-income women answering the Athena Breast Health Questionnaire app. [abstract]. In: Proceedings of the Fifth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2012 Oct 27-30; San Diego, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2012;21(10 Suppl):Abstract nr B81.

Background: For more than a decade, genetic counseling and testing have been used by affluent and insured women in an effort to reduce their risk of hereditary breast cancer. Low-income women have had little if any access to these services or to risk reduction education and outreach where free or low-cost services are available. Integrating a recruitment and referral strategy into an existing statewide phone service used by thousands of low-income women was expected to be an efficient and sustainable model for reaching those with this rare but serious health risk. This study was designed to assess the feasibility of this approach and to determine if low-income women could be successfully connected with existing free genetic counseling and testing services. Methods: Low income women throughout California access free breast and cervical cancer screening via the state's Cancer Detection Program toll-free phone service known as “Every Woman Counts” (EWC). We developed and pre-tested: i) a brief family history screener for administration to English and Spanish-speaking women from six San Francisco Bay Area Counties (SFBA) who call to request screening referrals (free genetic counseling and testing are available in these languages to women in the SFBA through UCSF); and ii) a referral strategy for use by EWC with high-risk women. A randomized trial with a delayed intervention control is being conducted to test an intervention in which callers identified as potentially at high risk are called back for a baseline survey and then randomized to receive either the offer of an appointment or a mailed brochure with a number to call. A follow-up survey is conducted with all participants two months following randomization. At that time, all women in the control group and the intervention group who have not had counseling are offered a counseling appointment. Results: To date EWC has identified 1035 eligible (by region and language) callers, of whom 596 (58%) agreed to participate in our study. Of these, 85 (14%) were high risk according to our screener, and so far 72 have been randomized to immediate or delayed referral to genetic counseling. The race/ethnicity of this study sample is: Asian, 9.4%; Black/African American, 10.6%; Hispanic, 23.5%; Native Hawaiian/Pacific Islander, 3.5%; White, 46%; more than one race 3.5%: unknown, 3.5% The immediate referral appears significantly more effective than the mailed brochure in encouraging high-risk women to obtain genetic counseling. Out of the 72 randomized, 26 (36%) have received counseling. Of these, 13 (18%) were in the intervention group and counseled during the two-month intervention period, compared with only 3 (4%) in the control group who were counseled during the intervention period. Conclusions: It is feasible to identify low-income women at risk for hereditary breast cancer among callers to a statewide cancer screening phone line, and a brief phone intervention is effective in connecting them with free genetic counseling. Citation Information: Cancer Epidemiol Biomarkers Prev 2011;20(10 Suppl):A37.

Background: Underserved families at risk of Hereditary Breast and Ovarian Cancer (HBOC) have decreased access to genetic cancer risk assessment (GCRA). Neither the process nor outcomes of GCRA have been carefully studied in large and diverse underserved populations. The Consortium of Underserved BRCA testers (CUB), formed in 2010 among three county hospitals, aims to rigorously study GCRA and patient outcomes at each site. Methods: CUB's founding members are: San Francisco General Hospital (SF), Stroger Hospital of Cook County (Chicago), and Grady Memorial Hospital (Atlanta). Underserved patients are defined as low-income, low literacy, uninsured, and/or members of ethnic, racial and linguistic minority groups. Together we developed a common clinical and research protocol, with standardized intake forms, questionnaires, follow-up protocols, and research instrument delivery. Using mixed methods, we examined and compared referral patterns, demographics, and BRCA test results between sites. We used chart reviews and common data collection instruments to gather and pool data. Using descriptive and comparative statistics, we examined similarities and differences between Consortium sites. Results: The GCRA programs in SF, Chicago, and Atlanta began 9, 6, and 3 years ago, respectively. Medicaid funding for BRCA testing has been available in SF since 2011, in Chicago since 2009, and is not yet available in Atlanta. Each site has a unique referral process for GRCA, including specialty and primary care clinics, mammography, and family members. Chi-squared analysis demonstrated significantly different referral patterns between each site (p The ratio of women referred to women tested for a BRCA mutation is 4.0:1 in SF, 2.40:1 in Chicago, and 1.5:1 in Atlanta. Differences in these ratios relate to referral and outreach sources, as well as funding for BRCA testing. The percentage of women found to have BRCA mutations was similar at each site: 18% in SF, 16% in Chicago, and 13% in Atlanta. There were significant differences, however, in the ethnic and racial composition of the population tested between sites. In SF, 9% were African American, 21% were Asian, 41% were Caucasian, and 25% were Hispanic. In Chicago, 38% were African American, 7% were Asian, 25% were Caucasian, and 26% were Hispanic. In Atlanta, 67% were African American, 2% were Asian, 13% were Caucasian, and 5% were Hispanic. Conclusions: Despite significant differences in referral patterns and Medicaid funding for BRCA testing, underserved women at all 3 public hospitals demonstrated similar BRCA positive rates, which are similar to positive rates at tertiary cancer centers and University hospitals. To our knowledge, this cohort of 636 BRCA testers is among the largest, most diverse population of its kind. In the future, CUB hopes to serve as a valuable resource to share best practices and investigate outcomes for underserved families at risk of HBOC. Citation Information: Cancer Epidemiol Biomarkers Prev 2011;20(10 Suppl):A39.

Purpose: With the support of the Avon Foundation, genetic counseling is available to underserved populations at the San Francisco General Hospital. One of the major challenges in providing genetic counseling for hereditary breast and ovarian cancer among these women is the lack of culturally appropriate educational tools.The purpose of this study is to evaluate the use of a Cancer Risk Educational Intervention (CREdIT), a novel audio-visual PowerPoint-based tool as an adjunct to genetic counseling. Methods: CREdIT took on average 15 minutes to view and was available in English and Spanish. It employed non-scientific images and language specifically designed for use by our target population. Participant questionnaires evaluating patient satisfaction, risk perception, knowledge of cancer genetics, and anxiety were administered before and after the intervention and at 1 year follow-up. For each of the continuous outcomes, differences from pre- to post-intervention were assessed with analyses of variance, while chi-squared tests were used to examine the differences among categorical variables. Results: A total of 52 women of diverse backgrounds who were on average 47 years old (range 27-69) took part in the study. Of these, 15% reported previous history of cancer, 58% were non-white and 59% had a below college education. Twenty-one percent viewed the presentation in Spanish. Following the presentation of CREdIT, we found an increase in the knowledge of BRCA inheritance and associated risk of malignancy, and options for risk reduction (all p < .05). However, participants' perceived risk perception did not change from baseline to post-CREdIT (p=.73). Virtually all participants (98%) reported that CREdIT helped them learn more about cancer risk. Although patient anxiety decreased post-CREdIT (p=.02), 29% patients reported that CREdIT made them worry more about cancer. Among 32 participants who were interviewed at the long-term follow-up, we found that, compared to post-CREdIT, knowledge changed for only two of the seven questions (p< .05). There were also no changes in anxiety or cancer worry compared to baseline (both p< .05). Conclusions: These interim findings suggest that our intervention was successful at increasing knowledge regarding breast cancer genetics without increasing anxiety or cancer worry. Our long-term goal is to perform a large-scale evaluation among underserved women at risk of hereditary cancer across the Avon Foundation-supported clinics nationwide. Citation Information: Cancer Res 2009;69(24 Suppl):Abstract nr 4074.

Abstract #2101 Introduction: In underserved, lower literacy and multiethnic women at risk of Hereditary Breast and Ovarian Cancer (HBOC), there is a need for culturally appropriate educational tools. The purpose of this Phase I study is to evaluate the use of a Cancer Risk Educational Intervention Tool (CREdIT) as an adjunct to genetic counseling for HBOC for underserved women at San Francisco General Hospital (SFGH). Methods: CREdIT is a 15 minute audio-visual powerpoint story presentation (available in English and Spanish) which employs non-scientific images and language specifically designed for use by our target population. Participant questionnaires, administered before and after the intervention, evaluate patient satisfaction, risk perception, knowledge of cancer genetics, and anxiety. Genetic counselor questionnaires address counselor satisfaction and time-flow. Results: To date, we have recruited 23 women of diverse backgrounds (mean age of 46, range: 26 to 63). Of these, seven (30%) are first-generation immigrants and four (17%) have less than a high school diploma. Eight (35%) have had cancer, and eighteen (78%) reported that cancer runs in their families. We have found an increase in knowledge following the CREdIT presentation, specifically vis-à-vis BRCA inheritance, BRCA-associated cancer risk, and risk-reducing options (all p < 0.05). These improvements occur without an increase in patient anxiety (p > 0.05). All participants believed that the presentation helped them learn more about cancer risk, and genetic counselors reported increased patient preparedness and counselor satisfaction as a result of CREdIT use (p < 0.05). Mean genetic counselor consultation time decreased by 5.5 minutes after CREdIT use. Conclusions: CREdIT appears to increase knowledge and improve understanding of BRCA-associated risks without raising anxiety in underserved women at risk of HBOC. Genetic counselors report increased satisfaction and patient preparedness, and decreased counseling time with CREdIT. Future work will involve examining long-term outcomes of CREdIT use; subgroup analyses to identify patient populations most likely to benefit from CREdIT; further evaluation using clinical trial methodology; and strategies for its dissemination to other settings working with underserved, multiethnic populations. Citation Information: Cancer Res 2009;69(2 Suppl):Abstract nr 2101.

Nausea and vomiting are among the most distressing symptoms for cancer patients treated with chemotherapy even with the widespread use of 5-HT3 antagonists. Chemotherapy-induced nausea and vomiting (CINV) is composed of 4 major components: acute nausea, delayed nausea, acute vomiting, and delayed vomiting. Determining the relationship of each component of CINV on the functional status of women undergoing chemotherapy for breast cancer was the purpose of this study. This longitudinal, descriptive study recruited 303 patients with breast cancer undergoing chemotherapy from 40 study sites in the United States. Reliable and valid measures of CINV and functional status were employed. Patients demonstrated significant decreases in the following aspects of functional status as measured by the SF-36: physical functioning (P < .0005), role limitations due to physical problems (P = .003), general health (P = .029), vitality (P < .0005), and social functioning (P = .001). The pattern of reduction in usual activities and increase in hours of resting correlated best with 2 components of CINV--delayed nausea and delayed vomiting (P < .0001, each). The results of this study suggest that control of delayed CINV may contribute to the functional improvement of women receiving chemotherapy for breast cancer.

Dyspnea is a common problem among patients with interstitial fibrosis, lung cancer, cystic fibrosis, and chronic obstructive pulmonary disease. The slow but steady progression of such diseases, often punctuated by acute exacerbations or secondary illnesses, can lead to decision-making dilemmas among patients and their caregivers, such as when to accept mechanical ventilation, when to forgo aggressive therapies, and when to make formal end-of-life care plans. Two cases, a 74-year-old woman with dyspnea secondary to emphysema and a 65-year-old woman with recurrent lung cancer and severe exertional fatigue and dyspnea, illustrate how dyspneic patients approaching the end of life can be evaluated and treated. Four management strategies for dyspnea are discussed: reducing ventilatory impedance, reducing ventilatory demand, improving respiratory muscle function, and altering central perception. Physicians should encourage end-stage lung disease patients and their families to discuss issues such as hospitalization and mechanical ventilation, to prepare advance directives, and to participate in a plan to manage their dyspnea.