Psychosocial characteristics and quality of life among sexual and gender minority patients with cancer.

BACKGROUND: Underserved and minoritized patients with cancer often experience more psychosocial concerns and inferior quality of life (QOL) compared with majority populations. This study compared patient-reported psychosocial characteristics and QOL among self-identified sexual and gender minority patients with cancer vs cisgender-heterosexual patients with cancer treated at a National Cancer Institute-designated comprehensive cancer center in the United States. METHODS: Self-report data from 51 503 patients were obtained from an institutional standard-of-care electronic patient questionnaire that was completed prior to, or on the day of, the patient's initial visit. The electronic patient questionnaire collects demographic information, including sexual orientation and gender identity, psychosocial variables, and QOL using the validated Short Form Health Survey-12. Sexual orientation and gender identity information was used to identify self-identified sexual and gender minority and cisgender-heterosexual persons (ie, non-self-identified sexual and gender minority). Using parametric analyses, psychosocial variables and QOL measures were compared for self-identified sexual and gender minority vs non-self-identified sexual and gender minority patients with cancer. RESULTS: Compared with non-self-identified sexual and gender minority patients (n = 50 116), self-identified sexual and gender minority patients (n = 1387, 2.7%) reported statistically significantly greater concerns regarding getting help during treatment (2.6% vs 4.3%, respectively; P = .001) and concerns with ability to seek care (16.7% vs 21.6%, respectively, P < .001). Self-identified sexual and gender minority patients reported statistically significantly elevated mental health concerns and daily emotional and pain interference (all P < .001), whereas there was no statistically significant difference in daily interference due to physical functioning. CONCLUSION: These data reveal real-world disparities among self-identified sexual and gender minority patients with cancer, which can be used to develop psychosocial interventions tailored to address the unique psychosocial and QOL needs of this underserved and minoritized population and to ultimately improve cancer care.

Fertility Preservation Practices at Pediatric Oncology Institutions in the United States: A Report From the Children's Oncology Group.

PURPOSE: Fertility discussions are an integral part of comprehensive care for pediatric, adolescent, and young adult patients newly diagnosed with cancer and are supported by national guidelines. Current institutional practices are poorly understood. METHODS: A cross-sectional survey was distributed to 220 Children's Oncology Group member institutions regarding fertility discussion practices. Descriptive statistics were calculated for all variables. The association between specific practices and selected outcomes on the basis of sex was examined via multivariable logistic regression. RESULTS: One hundred forty-four programs (65.5%) returned surveys. Of these, 65 (45.1%) reported routine discussions of fertility with all female patients and 55 (38.5%) all male patients (P = .25). Ninety-two (63.8%) reported no specific criteria for offering females fertility preservation (FP), compared with 40 (27.7%) for males (P < .001). Program characteristics associated with fertility discussions included reproductive endocrinology and infertility on site (females odds ratio [OR], 2.1; 95% CI, 1.0 to 4.3), discussion documentation mandate (females OR, 2.3; 95% CI, 1.0 to 5.5; males OR, 3.5; 95% CI, 1.4 to 8.7), and cumulative institution-based FP infrastructure (which included [1] routine practice of documentation, [2] template for documentation, [3] mandate for documentation, and [4] availability of FP navigation; females OR, 1.6; 95% CI, 1.1 to 2.3; males OR, 2.3; 95% CI, 1.6 to 3.4). Utilization of practices unsupported by guidelines included offering sperm banking after treatment initiation (39/135 programs; 28.9%), gonadotropin-releasing hormone analogs for ovarian suppression/FP (75/144 programs; 52.1%), ovarian tissue cryopreservation at diagnosis for patients with leukemia (19/64 programs; 29.7%), and testicular tissue cryopreservation (23/138 programs; 16.7%) not part of a clinical trial. CONCLUSION: Despite recommended guidelines, fertility discussions with patients/families before treatment initiation are not routine at Children's Oncology Group institutions. Standard criteria to determine which options should be offered to patients are more common for males than females.

Survey of Clinical Providers and Allied Health Staff at a National Cancer Institute-Designated Comprehensive Cancer Center: Cultural Awareness in the Care of LGBTQ2S + Patients with Cancer.

To identify potential gaps in attitudes, knowledge, and practices towards LGBTQ2S + patients with a cancer diagnosis, a survey of clinical providers (CP) and allied health staff (AHS) was conducted to identify areas of improvement and guide development for future education and training. A previously published, validated survey was adapted at the direction of a LGBTQ2S + Patient and Family Advisory Council, and modified to include AHS. The survey was disseminated to all faculty and staff, and was adapted to the participants' self-identified level of patient interaction/care responsibilities. Subsections consisted of questions related to demographics, knowledge, attitudes, and practice behaviors towards participating in the care of LGBTQ2S + patients. Results were quantified using stratified analysis and an attitude summary measure. Of the 311 respondents, 179 self-identified as CPs and 132 as AHS. There was high agreement in comfort treating or assisting LGBTQ2S + patients by CP and AHS respondents, respectively. CPs possessed significantly higher knowledge regarding LGBTQ2S + health when compared to AHS; however, there remained high percentages of "neutral" and "do not know or prefer not to answer" responses regardless of clinical role. There was high agreement regarding the importance of knowing a patient's gender identity (GI) and pronouns (CP vs. AHS; 76.9% vs. 73.5% and 89.4% vs. 84.1%, respectively), whereas patient's sexual orientation and sex assigned at birth (CP vs. AHS; 51.1% vs. 53.5% and 58.6% vs. 62.9%, respectively) were viewed as less important. There was high interest in receiving education regarding the unique needs of LGBTQ2S + patients regardless of clinical role. Stratified analyses of CPs revealed early-career physicians (< 1-5 years from graduation) expressed higher interest in additional education and involvement with LGBTQ2S + -focused trainings when compared to mid- and late-career providers. This is the first study, to our knowledge, assessing the attitudes, knowledge, and practices of CPs and AHS regarding the care of LGBTQ2S + patients with cancer. Overall, there was high comfort treating/assisting LGBTQ2S + patients among CP and AHS respondents, respectively; yet, both groups possessed significant gaps in LGBTQ2S + -focused knowledge.

Infrastructure of Fertility Preservation Services for Pediatric Cancer Patients: A Report From the Children's Oncology Group.

PURPOSE: Fertility preservation (FP) services are part of comprehensive care for those newly diagnosed with cancer. The capacity to offer these services to children and adolescents with cancer is unknown. METHODS: A cross-sectional survey was sent to 220 Children's Oncology Group member institutions regarding institutional characteristics, structure and organization of FP services, and barriers to FP. Standard descriptive statistics were computed for all variables. The association between site-specific factors and selected outcomes was examined using multivariable logistic regression. RESULTS: One hundred forty-four programs (65.5%) returned surveys. Fifty-three (36.8%) reported a designated FP individual or team. Sperm banking was offered at 135 (97.8%) institutions, and testicular tissue cryopreservation at 37 (27.0%). Oocyte and embryo cryopreservation were offered at 91 (67.9%) and 62 (46.6%) institutions, respectively; ovarian tissue cryopreservation was offered at 64 (47.8%) institutions. The presence of dedicated FP personnel was independently associated with the ability to offer oocyte or embryo cryopreservation (odds ratio [OR], 4.7; 95% CI, 1.7 to 13.5), ovarian tissue cryopreservation (OR, 2.7; 95% CI, 1.2 to 6.0), and testicular tissue cryopreservation (OR, 3.3; 95% CI, 1.4 to 97.8). Only 26 (18.1%) participating institutions offered all current nonexperimental FP interventions. Barriers included cost (70.9%), inadequate knowledge or training (60.7%), difficulty characterizing fertility risk (50.4%), inadequate staffing (45.5%), and logistics with reproductive specialties (38%-39%). CONCLUSION: This study provides the most comprehensive view of the current landscape of FP infrastructure for children and adolescents with cancer and demonstrates that existing infrastructure is inadequate to offer comprehensive services to patients. We discuss modifiable factors to improve patient access to FP.

Exploring Spirituality and Technology Receptivity Among a Sample of Older Blacks to Inform a Tailored Chronic Disease Self-Management mHealth Intervention.

INTRODUCTION: Having multiple chronic conditions (MCC) is the most common health condition in older US adults of which Blacks are disproportionally affected. The management of each condition presents many challenges. Blacks in the US frequently cite spirituality as facilitator to well-being. More information is needed to understand the many aspects of spirituality that older Black patients use to manage MCCs. METHODS: In the current study, focus groups were conducted with 30 black men and women with MCCs to examine how spirituality can be incorporated into a mobile health intervention designed to increase chronic disease self-management (CDSM) skills by improving health literacy. Groups discussed spiritual practices used to facilitate CDSM and their perceptions about mobile technology use. RESULTS: Inductive thematic analysis suggested that a chronic disease wellness plan that acknowledges the relationship between spirituality and health was preferred by most participants. Additionally, the desire for mobile health (mHealth) among this group points to an opportunity for intervention. DISCUSSION: Creating culturally appropriate educational messages about CDSM that incorporate spiritual practices may be a useful method for building sustainable CDSM skills. Next steps include the development of a mHealth intervention prototype based on the results and pre-testing it prior to deployment.

A survey of oncology advanced practice providers' knowledge and attitudes towards sexual and gender minorities with cancer.

AIMS AND OBJECTIVES: To evaluate the knowledge and attitudes towards sexual and gender minority (SGM) oncology patients' needs among advanced practice providers (APPs). BACKGROUND: SGM individuals experience health disparities, in part due to lack of access to knowledgeable providers. Despite the important role of APPs in cancer care, less is known about their attitudes and knowledge towards SGM cancer patients. DESIGN: Cross-sectional study. METHODS: A survey of APPs at a National Cancer Institute-Designated Comprehensive Cancer Center assessed self-reported demographics, attitudes, knowledge and postsurvey confidence in knowledge of SGM oncology patient needs. Reporting of this study adheres to STROBE guidelines. RESULTS: Knowledge of health needs was low with an average of 2.56 (SD = 1.27) items answered correctly out of 6. The majority of APPs self-reported being comfortable treating SGM patients (93.6% and 87.2%, respectively), but less confident in knowledge of their health needs (68.0% and 53.8%, respectively). Although less than half of APPs believed education should be mandatory (44.9%), 79.5% were interested in education about SGMs' unique health needs. Political affiliation, medical specialty, licensure, and having SGM friends or family were associated with various attitude items, but not knowledge. Moderation analyses indicated that APPs who had greater overall knowledge scores were more likely to agree, on average, that knowing sexual orientation, gender identity and sex assigned at birth are important to providing quality oncology care. CONCLUSION: APPs report being comfortable providing care for SGMs with cancer, but knowledge gaps remain that may inhibit the quality of care provided. Given the interest in education, results would support the development of SGM-related healthcare training for oncology APPs. RELEVANCE TO CLINICAL PRACTICE: Targeted education for providers during training and continuing education is likely to improve the provision of quality care for SGMs with cancer.

Provider perceptions' of a patient navigator for adolescents and young adults with cancer.

PURPOSE: Healthcare providers (HCPs) and other staff at a comprehensive Cancer Center were interviewed on how to best implement a patient navigator position when working with adolescents and young adults (AYA) with cancer. Research objectives included assessing staff perceptions of (a) barriers to optimal care for AYA, (b) roles and responsibilities for a patient navigator, and (c) training needed for future patient navigators. METHODS: Semi-structured interviews were conducted with 17 staff members providing care to AYA. Verbatim transcripts were hand-coded using inductive content analysis. RESULTS: Roles and responsibilities of a patient navigator were described as needing to coordinate services, be knowledgeable of resources inside and outside the Cancer Center, provide emotional support, advocate for AYA, assist with financial and insurance issues, and serving as the first point of contact. CONCLUSIONS: Staff serving AYA reported the desired roles and training they wished a patient navigator to possess. This study contributes to the literature by conducting stakeholder assessment of the goals and roles of an AYA patient navigator (PN). PN positions should be adapted to the workflow and ethos of the institution.

National Survey of Oncologists at National Cancer Institute-Designated Comprehensive Cancer Centers: Attitudes, Knowledge, and Practice Behaviors About LGBTQ Patients With Cancer.

PURPOSE: To identify potential gaps in attitudes, knowledge, and institutional practices toward lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ) patients, a national survey of oncologists at National Cancer Institute-Designated Comprehensive Cancer Centers was conducted to measure these attributes related to LGBTQ patients and desire for future training and education. METHODS: A random sample of 450 oncologists from 45 cancer centers was selected from the American Medical Association's Physician Masterfile to complete a survey measuring attitudes and knowledge about LGBTQ health and institutional practices. Results were quantified using descriptive and stratified analyses and by a novel attitude summary measure. RESULTS: Of the 149 respondents, there was high agreement (65.8%) regarding the importance of knowing the gender identity of patients, which was contrasted by low agreement (39.6%) regarding the importance of knowing sexual orientation. There was high interest in receiving education regarding the unique health needs of LGBTQ patients (70.4%), and knowledge questions yielded high percentages of "neutral" and "do not know or prefer not to answer" responses. After completing the survey, there was a significant decrease ( P < .001) in confidence in knowledge of health needs for LGB (53.1% agreed they were confident during survey assessment v 38.9% postsurvey) and transgender patients (36.9% v 19.5% postsurvey). Stratified analyses revealed some but limited influence on attitudes and knowledge by having LGBTQ friends and/or family members, political affiliation, oncology specialty, years since graduation, and respondents' region of the country. CONCLUSION: This was the first nationwide study, to our knowledge, of oncologists assessing attitudes, knowledge, and institutional practices of LGBTQ patients with cancer. Overall, there was limited knowledge about LGBTQ health and cancer needs but a high interest in receiving education regarding this community.

Comparing fertility preservation resources and policies between NCCN member and non-member institutions.

PURPOSE: The National Comprehensive Cancer Network (NCCN) created guidelines to facilitate implementation of fertility preservation (FP) discussions and referrals for adolescent and young adult patients. We assessed if availability of workplace FP resources and referral policies differed among learners in the Educating Nurses about Reproductive Health in Cancer Healthcare (ENRICH) training program based on NCCN membership. METHODS: Learners completed a baseline application, including demographic information and the availability of FP resources and referral policies. Learners were categorized as either NCCN members or non-members and chi-square tests compared resources between the two groups. RESULTS: Learners from NCCN institutions reported the highest rates of established FP referral guidelines (p < .01), reproductive endocrinologist and infertility specialist (REI) on staff (p < .01), partnerships with REI, educational materials for staff (p < .05), and patients (p < .01). CONCLUSION: FP resources and referral policies were highest among learners from NCCN member institutions, but areas for development with fertility issues still exist and learners from non-member institutions may assist their workplaces in improving rates of discussions and referrals based on their ENRICH training. PRACTICE IMPLICATIONS: The variation of available resources and referral policies between groups suggests more FP education and training; focusing on implementation programs is needed to make steps towards impactful institutional level resources and policies.

Culturally Competent Care for Sexual and Gender Minority Patients at National Cancer Institute-Designated Comprehensive Cancer Centers.

PURPOSE: This study sought to identify the policies and guidelines regarding culturally competent care of sexual and gender minority (SGM) cancer patients and survivors at National Cancer Institute (NCI)-Designated Comprehensive Cancer Centers. METHODS: This study used an in-depth interview qualitative approach. Semistructured interviews were conducted via telephone with representatives from 21 of the 45 NCI-Designated Comprehensive Cancer Centers in 2015. Verbatim transcripts were created from the audiotapes for content analysis. RESULTS: Two main themes were identified as follows: (1) patient-focused experiences and support and (2) organization-focused development activities. Most of the cancer centers in this study had an advisory committee to assist with SGM policies and guidelines. Despite the existence of these committees, the majority of centers did not have explicit policies, guidelines, or routine practices addressing the following issues: the collection and integration of sexual orientation and gender identity information in the medical record, gender-neutral language on patient forms, patient educational materials with SGM-specific health concerns, SGM-specific support for cancer survivors, or required SGM-specific cultural competency trainings for medical and nonmedical staff. CONCLUSION: In general, the cancer centers in this study lacked institutional policies, guidelines, and practices focused on patient-centered cancer care for SGM populations. Coordinated efforts are needed to systemically improve patient-centered cancer care for these populations.

Adolescent and Young Adult Patients with Cancer: Perceptions of Care.

BACKGROUND: Adolescent and young adults with cancer (AYACs) face unique medical, psychosocial, and supportive care needs. The purpose of this study was to identify AYACs perceptions and expectations of cancer care services on and off treatment. METHODS: Semistructured interviews were conducted with 23 AYACs aged 19-38 years (13 on and 10 off treatment), who were receiving care at a comprehensive cancer center. Verbatim transcripts were created from audiotaped interviews and hand coded using inductive content analysis methodology. RESULTS: Perceptions of optimal care were reported by AYACs through two main themes as follows: perceived barriers and facilitators during treatment. Within each main theme were three subthemes, including perceived facilitators reported as the provision of social support, the website and patient portal, and the educational information provided by the cancer center. Younger female AYACs (age 19-31) on active treatment reported perceived barriers to optimal care related to the management of physical and mental health symptoms, while older patients (age 32 and up) on active treatment endorsed a fear of cancer returning. The third perceived barrier equally endorsed by patients both on and off treatment and across age ranges included limited assistance with financial issues. CONCLUSIONS: AYACs reported perceived barriers and facilitators to optimal care. Implications for these findings are discussed in the context of the importance of adding a patient navigator to the AYACs care team.

Identifying clinical and support service resources and network practices for cancer patients and survivors in southern Puerto Rico.

OBJECTIVE: The objectives of this study were to identify cancer-related health care services and to explore the presence of inter-organizational interactions among clinical and support oncology services in southern Puerto Rico. METHODS: From January through July of 2010, a survey was completed by 54 health care organizations offering clinical, supportive, or both services to cancer patients/survivors (CPS) in southern PR. Survey data were compiled and descriptive analyses performed using the software Statistical Package for a Social Science (SPSS), version 18.0. RESULTS: The distribution of the primary services provided by the participating organizations was the following: 26 had clinical services, 16 had support services, and 12 offered a combination of clinical and support services. Only 24 % of the surveyed organizations offered their services exclusively to patients diagnosed with cancer. In terms of referral practices, 61 % of the responses were for medical specialists, 43 % were for mental health services, and 37 % were referrals for primary care services. The most common reason for interacting (n = 27) was to provide a given patient both a referral and information. CONCLUSION: Findings suggest gaps in both the availability of oncology services and the delivery of integrated health care. Lack of communication among clinical and support organizations (for cancer patients, specifically) could negatively impact the quality of the services that they offer. Further network analysis studies are needed to confirm these gaps. Until systemic, structural changes occur, more efforts are needed to facilitate communication and collaboration among these kinds of organization.

Discussion of First-Degree Relatives' Colorectal Cancer Risk: Survivors' Perspectives.

Although screening reduces colorectal cancer (CRC) incidence and mortality, screening rates are low, particularly among CRC patients' first-degree relatives (FDRs). Little is known about discussion of family members' risk of CRC among patients and their health care providers or with their FDRs. The purpose of this research, guided by the Protection Motivation Theory, was to assess patients' patterns of disclosure of CRC diagnosis to adult siblings and/or children and discussion of familial risk by healthcare providers. A cross-sectional sample of patients who received care at a comprehensive cancer center was recruited to complete telephone-based interviews related to disclosure of CRC diagnosis to FDRs, recall of physician counseling about familial risk, and patients' perception of CRC risk to FDRs. Sixty-nine patients completed the interview. Most participants (n = 67, 97%) had informed their adult children or siblings of their CRC diagnosis to keep their family informed of their health status (n = 15, 22%) and to encourage FDRs to screen for CRC (n = 14, 20%). More than half of the participants' physicians (n = 38, 55%) discussed FDRs' risk of developing CRC with the patient. However, a substantial proportion of patients reported no physician discussion of this risk (n = 28, 41%). Data from this study may guide the development of interventions to facilitate physician discussion and counseling of CRC patients about their FDRs' risk for CRC. However, future studies should explore whether FDRs are likely to be screened after becoming aware of their family member's diagnosis of CRC.

Oncofertility resources at NCI-designated comprehensive cancer centers.

NCI-designated comprehensive cancer centers (CCCs) set the standard for providing exemplary patient care. Quality cancer care includes discussions about fertility and referrals to fertility specialists for patients at risk for sterility. This study sought to determine what fertility preservation (FP) resources are available in CCCs and how well those are integrated into patient care. Leaders at each CCC received a letter requesting a short telephone interview with individuals who could provide information about the institution's FP resources. A semi-structured interview guide was used and responses were audio-recorded. Data were analyzed using content and thematic analysis. Interviews were conducted with 30 of the 39 CCCs that see adult patients (77%). The remaining institutions included 4 nonresponders, 3 that referred the interviewers to childhood cancer survivorship clinics, 1 that refused, and 1 that could not identify any FP resources. Participants were primarily affiliated with reproductive endocrinology (n=15) or hematology/oncology divisions (n=10). Institutional policies regarding consistent provision of FP information were rare (n=4), although most sites (n=20) either had some services on-site or had referral programs (n=8). However, only 13 had some experimental services, such as ovarian tissue cryopreservation. Respondents reported barriers to provision of FP, including oncologists' identification of patients at risk, low referral rates, and perceptions of patient prognosis. Only 8 (27%) sites had staff with time dedicated to FP. CCCs vary widely in implementing FP-recommended practice to their patients. CCCs are positioned to provide exemplary oncofertility care, but most need to better integrate FP information and referral into practice.

Feasibility trial of a Spanish-language multimedia educational intervention.

BACKGROUND: Hispanic cancer patients are underrepresented in clinical trials; research suggests lack of knowledge and language barriers contribute to low accrual. Multimedia materials offer advantages to Hispanic populations because they have high acceptability, are easy to disseminate, and can be viewed with family. PURPOSE: Hispanic cancer patients and caregivers participated in focus groups to aid in developing a Spanish-language multimedia intervention to educate Hispanic cancer patients about clinical trials. We explored the feasibility of delivering the intervention in medical oncology clinics. METHODS: A total of 35 patients were randomized to either the multimedia intervention group (n = 18) or a control group (n = 17) who were asked to read the National Cancer Institute's Spanish-language clinical trials brochure. Self-reported data on knowledge about and attitudes toward clinical trials, self-efficacy for participating in a clinical trial, intention to participate in a clinical trial if asked, and receptivity to information about a clinical trial were collected at baseline and 10 days later. RESULTS: Delivery of the multimedia presentation in oncology clinics was feasible. The intervention group had more knowledge about clinical trials at follow-up than the control group; scores for intention to participate in a clinical trial by participants in the intervention group increased from 3.8 to 4.0 of a possible 5, but declined in the control group from 4.5 to 4.1. No statistically significant difference was detected between groups in scores for attitudes or self-efficacy for making a decision to participate in a clinical trial. LIMITATIONS: Our sample size was inadequate to identify differences between the informational methods. Although all patients were asked about their willingness to participate in a clinical trial, this decision was hypothetical. In addition, the study was conducted with a sample of Spanish-speaking Hispanic cancer patients at a comprehensive cancer center in Florida. Thus, the results may not generalize to other Hispanic populations. CONCLUSION: In the pilot project, we demonstrated the feasibility of delivering multimedia information to patients in medical oncology clinics. Because delivery in a clinical setting was found to be feasible, a larger study should be conducted to evaluate the efficacy of the multimedia intervention with respect to promoting accrual of Hispanic patients to clinical trials.

Understanding the psychosocial issues of African American couples surviving prostate cancer.

African Americans are disproportionately affected by prostate cancer, yet less is known about the most salient psychosocial dimensions of quality of life. The purpose of this study was to explore the perceptions of African American prostate cancer survivors and their spouses of psychosocial issues related to quality of life. Twelve African American couples were recruited from a National Cancer Institute Comprehensive Cancer Center registry and a state-based non-profit organization to participate in individual interviews. The study was theoretically based on Ferrell's Quality of Life Conceptual Model. Common themes emerged regarding the psychosocial needs of African American couples. These themes were categorized into behavioral, social, psychological, and spiritual domains. Divergent perspectives were identified between male prostate cancer survivors and their female spouses. This study delineated unmet needs and areas for future in-depth investigations into psychosocial issues. The differing perspectives between patients and their spouses highlight the need for couple-centered interventions.

Knowledge about hereditary colorectal cancer among colorectal cancer survivors.

AIM: Little is known about colorectal cancer (CRC) patients' knowledge regarding hereditary CRC (HCRC). The primary aim of this study was to evaluate CRC survivors' level of knowledge about HCRC and determine if this knowledge varies by demographic or clinical characteristics. METHODS: Data were obtained using a cross-sectional survey of CRC patients at low, moderate, and high risk for HCRC seen at a comprehensive cancer center over a 5-year period (n = 93). Seven items (with potential responses of yes/no/don't know) assessed patients' knowledge. A t-test was conducted to compare composite knowledge among individuals at increased risk for CRC to those who were not at increased risk. RESULTS: For all but one of seven questions, most individuals reported that they did not know the answer to the question. Knowledge among participants at increased risk for HCRC (mean = 2.46, standard deviation = 1.93) was greater than those who were not at increased risk (mean = 1.51, standard deviation = 1.84). There was a statistically significant difference in knowledge between the groups, t(90) = 2.40, p = 0.018. CONCLUSIONS: Results suggest an overall deficit of knowledge among CRC patients. More efforts should focus on increasing knowledge about HCRC prevention among patients and family members. With a better understanding of knowledge gaps, researchers and health-care providers can reevaluate how to better inform CRC patients about HCRC risks.

Promoting pre-conceptional use of folic acid to Hispanic women: a social marketing approach.

OBJECTIVE: To develop a culturally appropriate communication initiative in an effort to promote the use of pre-conceptional folic acid among Hispanic women of childbearing age. The materials were designed to communicate information about the risks of neural tube defects and the value of folic acid supplementation before conception. METHODS: The initiative was developed using a social marketing approach. A series of focus groups were conducted with Hispanic women, particularly Mexican and Mexican-American women, to gain an understanding of their knowledge, attitudes, and behaviors regarding birth defects and folic acid. Additionally focus groups assessed women's preferences for existing folic acid education materials. Qualitative analysis of coded transcripts revealed key themes which were incorporated into a multi-media initiative. RESULTS: Critical themes of the research highlighted the need to include the role of partners and a sense of family in the promotions aimed at these groups. Another key component was the need to dispel myths which act as barriers to pre-conceptional folic acid use. Other important elements included in the media products were the need for Spanish and English versions, an explanation of neural tube defects, and a reference to the cost of the supplements. CONCLUSION: The final products of the initiative included Spanish and English versions of a brochure, photo-novella, and radio public service announcement. Pre-testing results showed women understood the message, thought the message was for women like them, and expected to begin taking a folic acid supplement. Results of the overall evaluation of the initiative are on-going.

Communication and consumer decision making about cancer clinical trials.

Communication between patients and physicians likely mediates traditional patient and physician predispositions in determining patient outcomes, including perceptions and decision making. However, the extent to which a mediating effect occurs is unclear. The purpose of this essay is to outline the need for conceptualizing more holistic models of consumer-provider interaction that demonstrate the role of the therapeutic relationship in treatment outcomes. We focus on an important communicative context for exploring this question: the situation where patients, with the help of oncologists, are faced with making treatment choices, particularly whether to enroll in a clinical trial in response to their life-threatening cancer diagnosis. We explore the question from the perspectives of the medical provider, the patient, and the accompanying family member, in order to better frame the complex interactional dynamics occurring during the interaction.