Comparison of Health Communication Channels for Reaching Hispanics About Biobanking: a Pilot Trial.

Cancer education is essential for improving cancer prevention and biobanking knowledge among racial-ethnic minorities, with the goal of increasing diversity and representativeness of biospecimen collections. However, little is known about the communication modalities for optimal delivery of information. We examined feasibility of recruitment and compared communication modalities for delivering cancer prevention and biobanking education to Hispanics. Communication modalities were evaluated using participation rates and change in knowledge, attitudes, self-efficacy, intention, receptivity, and trust. Enrollment in a biobanking registry was a behavioral outcome. Community members in Ponce, Puerto Rico and Tampa, Florida were recruited. Participants (N = 254) were randomized to one of three communication modalities: standard dissemination (mailed materials); enhanced dissemination (mailed materials plus follow-up call); and 'charla' (face-to-face group discussion). Participants completed questionnaires about their knowledge, attitudes, self-efficacy, intentions, receptivity, and trust regarding biobanking and cancer prevention pre- and post-intervention. Knowledge, attitudes, and self-efficacy were improved among all three modalities. Although the greatest increases in knowledge were observed when the information was delivered via charla, the charla had the lowest participation rate. The standard and enhanced dissemination modalities were more feasible for delivering cancer prevention and biobanking education to Hispanics. Lack of differences among the three modalities suggests culturally tailored education may be sufficient to capture the community's intention to participate in biobanking research, regardless of the delivery method for the education. Results from this study contribute to the limited knowledge regarding Hispanics knowledge and intentions for biospecimen collection, and in the future may improve participation in this underrepresented group.

Importance of and Satisfaction with Psychosocial Support among Cancer Patients and Survivors in Puerto Rico: Gender, Health Status, and Quality of Life Associations.

OBJECTIVE: To assess needs perceptions regarding the importance of and satisfaction with psychosocial support among cancer patients and survivors in Puerto Rico. METHODS: A cross-sectional study was conducted in 181 participants (70 men and 111 women) who were either undergoing cancer treatment (patients) or had completed cancer treatment (survivors). Participants completed a sociodemographic and clinical characteristics questionnaire, and the Psychosocial Needs Inventory (PNI). RESULTS: The participants reported having or having had prostate (36%) or breast (32%) cancer or some other cancer type (32%). Of the 149 participants reporting cancer type, 130 were classified as having a high perceived level of health and quality of life, and 19 were classified as having a low perceived level of health and quality of life. In terms of perceived needs, the highest level of importance were assigned to the Support Network (e.g. family, friends, neighbors, care professionals; M = 2.88, SD = 0.43) and Health Professional (e.g., patient-health professional relationship, etc.; M = 2.80, SD = 0.50) categories, and the Emotional and Spiritual category was given the lowest importance (e.g., help managing negative emotions and spiritual counseling, etc.; M = 2.62, SD = 0.66). These perceptions varied by gender, perceived health status, and date of diagnosis. Women assigned more importance to the Health Professional and Information categories. CONCLUSION: The results reflect the importance of considering psychosocial needs when providing psychosocial support to cancer patients and survivors. These findings are anticipated to inform services provided by psychosocial oncology support programs in Puerto Rico.

Healthcare providers' knowledge and attitudes about rapid tissue donation (RTD): phase one of establishing a rapid tissue donation programme in thoracic oncology.

In preparation for the development of a rapid tissue donation (RTD) programme, we surveyed healthcare providers (HCPs) in our institution about knowledge and attitudes related to RTD with lung cancer patients. A 31-item web based survey was developed collecting data on demographics, knowledge and attitudes about RTD. The survey contained three items measuring participants' knowledge about RTD, five items assessing attitudes towards RTD recruitment and six items assessing HCPs' level of agreement with factors influencing decisions to discuss RTD. Response options were presented on a 5-point Likert scale. Ninety-one HCPs participated in the study. 66% indicated they had never heard of RTD prior to the survey, 78% rated knowledge of RTD as none or limited and 95.6% reported not having ethical or religious concerns about discussing RTD with patients. The majority were either not comfortable (17.8%) or not sure if they felt comfortable discussing RTD with cancer patients (42.2%). 56.1% indicated their knowledge of RTD would play an integral role in their decision to discuss RTD with patients. 71.4% reported concerns with RTD discussion and the emotional state of the patient. Physicians and nurses play an important role in initiating conversations about recruitment and donation to research that can ultimately influence uptake. Increasing HCP knowledge about RTD is a necessary step towards building an RTD programme. Our study provides important information about characteristics associated with low levels of knowledge and practice related to RTD where additional education and training may be warranted.

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.

Improving awareness of cancer clinical trials among Hispanic patients and families: audience segmentation decisions for a media intervention.

Clinical trials hold great promise for cancer treatment; yet, Hispanic cancer patients have low rates of clinical trial participation. Lack of awareness and knowledge of clinical trials and language barriers may account for low participation rates. Patient education through audiovisual materials can improve knowledge of and attitudes toward clinical trials among Hispanic populations. In this study, 36 Hispanic cancer patients/survivors and caregivers in Florida and Puerto Rico participated in focus groups to aid in developing a Spanish-language DVD and booklet intervention designed to increase knowledge about clinical trials. Focus group results showed (a) low levels of knowledge about clinical trials, (b) uncertainty about why a physician would expect a patient to make a choice about treatment, and (c) desire for family participation in decision making. Respondents expressed various preferences for aspects of the DVD such as showing extended family in the DVD and physician explanations about key terms. On the basis of these preferences, the authors developed a creative brief for a DVD. The content of the DVD was reviewed by Hispanic community leaders and key stakeholders. A final DVD was created, in Spanish, using Hispanic patients and physicians, which contained the information deemed important from the focus groups and stakeholder interviews. The DVD is complete with companion booklet and currently undergoing a randomized control trial.

Cognitive and psychological impact of BRCA genetic counseling in before and after definitive surgery breast cancer patients.

PURPOSE: To examine changes in cancer-related knowledge, distress, and decisional conflict from pre- to post-genetic counseling (GC) in before (BDS) and after (ADS) definitive surgery breast cancer (BC) patients. METHODS: Sociodemographic and clinical characteristics were collected at baseline; primary outcome data were collected before (T1) and after (T2) pretest GC. Within group changes for cancer-related knowledge, distress, and decisional conflict over genetic testing were compared by Wilcoxon signed-rank tests. RESULTS: Of 103 BC patients, 87 were ADS and 16 were BDS. Analyses revealed that both groups reported significant increases in knowledge between T1 and T2 (median change 4.2, p = 0.004, and 2.7, p < 0.001, for BDS and ADS patients, respectively). Overall cancer-related distress showed a downward trend between T1 and T2 for both groups and was significant for BDS patients (p = 0.041). Reports of BDS patients trended toward overall and subscale-specific increases in decisional conflict, with the exception of the uncertainty which trended downward, but did not reach significance. Overall decisional conflict decreased in ADS patients, approaching marginal significance (p = 0.056), with significant improvements in informed decision making (median change -12.6, p < 0.001; i.e., pretest GC yielded improved knowledge of benefits, risks, and side effects of available options). CONCLUSIONS: These pilot data suggest that pretest GC increases cancer-related knowledge for both BDS and ADS patients, decreases distress in BDS patients, and improves informed decision making in ADS patients. Future studies with larger sample sizes are needed to replicate these results.

Physicians' undecided attitudes toward posthumous reproduction: fertility preservation in cancer patients with a poor prognosis.

BACKGROUND: The American Society for Clinical Oncology (ASCO) established guidelines for fertility preservation for cancer patients. In a national study of US oncologists, we examined attitudes toward the use of fertility preservation among patients with a poor prognosis, focusing on attitudes toward posthumous reproduction. METHOD: A cross-sectional survey was administered via mail and Internet to a stratified random sample of US oncologists. The survey measured demographics, knowledge, attitude, and practice behaviors regarding posthumous reproduction and fertility preservation with cancer patients of childbearing age. RESULTS: Only 16.2% supported posthumous parenting, whereas the majority (51.5%) did not have an opinion. Analysis of variance indicated that attitudes toward posthumous reproduction were significantly related to physician practice behaviors and were dependent on oncologists' knowledge of ASCO guidelines. CONCLUSIONS: Physician attitudes may conflict with the recommended guidelines and may reduce the likelihood that some patients will receive information about fertility preservation. Further education may raise physicians' awareness of poor-prognostic patients' interest in pursuing this technology.

Developing strategies for reducing cancer disparities via cross-institutional collaboration: outreach efforts for the partnership between the Ponce School of Medicine and the Moffitt Cancer Center.

The disproportionate burden of cancer among U.S. Hispanics is well documented. Historically, epidemiologic data on U.S. Hispanics and cancer have aggregated all Hispanics as one homogeneous group without appreciating the diversity of this population with regard to nativity (nationality/geographic origin). The authors report on the initial efforts of a collaborative academic institutional partnership between a minority-serving institution and a National Cancer Institute-designated cancer center to address cancer health disparities in two Hispanic communities in Puerto Rico and Florida. This article outlines the joint Outreach Program's initial collaborative strategies and activities in community outreach, cancer education, and research that mutually benefit both the Ponce (Puerto Rico) and Tampa (Florida) Hispanic communities. This partnership program used innovative multipronged community-engagement strategies in the two communities to reduce cancer health disparities. Specific projects and lessons learned from three outreach/cancer education projects and two pilot research projects are discussed. The challenges of balancing service and research agendas in communities with disparate levels of resources and infrastructure are summarized to inform future initiatives in this partnership, as well as serve as an example for similar minority-serving institution/cancer center partnerships to reduce cancer health disparities.

Enhancing oncology health care provider's sensitivity to cultural communication to reduce cancer disparities: a pilot study.

Under the auspices of a partnership grant to reduce cancer health disparities, Moffitt Cancer Center (MCC) partnered with the Ponce School of Medicine to identify the perceived cultural communication needs of MCC healthcare providers regarding Hispanic patients with limited or no English skills. Oncologists (N = 72) at MCC were surveyed to identify the specific areas of cultural communication techniques for which they desired to receive additional training. The majority of participants (66%) endorsed an interest in obtaining training to communicate difficult issues (terminal illness, controversial diagnosis) in a manner respectful to Hispanic culture. A workshop was conducted with providers (N = 55) to improve cultural communication between Hispanic patients and families focusing on culture, terminal illness, and communication strategies. Findings from a pre-post test indicate an overall positive response to the workshop. Results from this study can help inform future efforts to enhance cultural competency among health providers.

Awareness, perceptions, and provider recommendation related to genetic testing for hereditary breast cancer risk among at-risk Hispanic women: similarities and variations by sub-ethnicity.

This study explored awareness of risk factors for hereditary breast and ovarian cancer (HBOC), awareness, knowledge and concerns about genetic testing, and preference for how to have genetic testing recommended by a care provider among at-risk Hispanic women. Differences in these factors among Mexican, Cuban, and Puerto Rican women were also examined. Women with a personal or family history of breast or ovarian cancer from the Tampa Bay Area participated in a qualitative interview (N = 53). Data were analyzed using a combination of open and axial coding with a grounded theory approach. Study participants in all groups reported: being aware that family history was a breast cancer risk factor, limited knowledge of genetic testing, fear of test results, concerns about children's risks, and no physician referral for genetic testing. Noteworthy sub-ethnic differences included preferences for physician recommendation and information about genetic testing. This study provides important preliminary information about areas related to HBOC that require additional education in the Hispanic community as a whole and by sub-ethnicity.

Combatting the Opioid Crisis From Prison: Initiating Opioid Agonist Therapy.

Presented is a case report of a young man dependent on fentanyl who did not receive opioid agonist therapy (OAT) during incarceration. Highlighted are the barriers to accessing OAT in custody, which exacerbates problems with drug-seeking behavior, diversion, and recidivism. Discussed are the implications for correctional healthcare, including the benefits of utilizing telehealth services to maximize accessibility to OAT in correctional institutions that will not only enhance the quality of patient care but also address the growing opioid epidemic across Canada.

Stakeholder perceptions of thoracic rapid tissue donation: An exploratory study.

Rapid autopsy or rapid tissue donation (RTD) is a novel method of tissue procurement in which 'fresh' tissue is collected within 2-6 h following the death of a patient. While the use of RTD offers many opportunities to develop new therapies for lung cancer patients, it raises ethical concerns. The purpose of this study was to examine knowledge, perceptions and ethical concerns about recruiting patients for an RTD program. To achieve research goals, we conducted six focus groups, each containing 5-10 participants (N = 38). Participants were cancer patients (n = 17) their caregivers (n = 6), physicians (n = 6) and clinic staff (n = 9) from the Thoracic Oncology Program at Moffitt Cancer Center, in Tampa, Florida, USA. All focus groups were audio-recorded and conducted using a semi-structured focus group guide. The transcripts were analyzed using hand-coding methods. Data were coded independently by at least two researchers, and an inter-rater reliability rate of ≥90% was achieved. Knowledge about RTD was low among all groups, with physicians having slightly higher knowledge; all groups agreed that RTD offered major benefits to cancer research; physicians and clinic staff were mainly concerned about making a patient feel uncomfortable and reducing hope, while, patients and family members were more concerned about logistics and how the family would be affected during tissue retrieval. All groups agreed the physician was the appropriate person to begin a discussion about RTD and that recruitment should be individualized. All groups reported that physician training is necessary, as well as an awareness campaign for patients and families to be more receptive about RTD. The results of this study suggested more education is needed for all stakeholders to learn about RTD prior to the initiation of a research program. Our approach of querying all stakeholders provides a firm foundation for future training modules regarding RTD programs in lung cancer.

Preferences for hereditary breast and ovarian cancer information among Mexican, Cuban and Puerto Rican women at risk.

BACKGROUND: Little is known about the preferences of at-risk Hispanic women to gain information on hereditary breast and ovarian cancer (HBOC). AIMS: This study sought to qualitatively explore preferences for HBOC information among at-risk Mexican, Puerto Rican and Cuban women and to pilot a mock brochure aimed at Hispanic women. METHODS: Hispanic women aged 18-65 years with a personal or family history of breast or ovarian cancer participated in a semistructured interview. Data were analyzed using a combination of open-coding and content analysis. RESULTS: Fifty-three women participated in the study. For the majority of content areas, there were no major differences between the subethnicities. All women reported discussing cancer with a doctor after a family member had been diagnosed and discussing cancer within their families; however, the content of the discussion varied. Cuban and Puerto Rican women reported using the Internet routinely for health care information while Mexican women said they did not have access to computers and did not use them. All women liked the content and photos in the brochure but Mexican women thought the reading level was too high. Preferences for the spokesperson focused on the need for Spanish-speaking health care providers. CONCLUSIONS: While the data show some similarities, such as patterns of cancer discussion and appreciation of the mock brochure, there were differences between the groups on information preferences. In designing HBOC education information for Hispanic audiences, it is important to consider varied channels for dissemination and preferences for specific types of information across subethnicities.

Challenges in recruiting Mexican women for cancer genetics research.

Hispanic women often have low participation rates in cancer genetics research. Additionally, Hispanic sub-ethnicities may have varying accrual rates based on unique cultural factors. Hispanic women were recruited through flyers placed in the Tampa Bay Community to participate in an interview about knowledge of hereditary breast and ovarian cancer. The study goal was to recruit 20 women from each Hispanic sub-ethnicity: Puerto Rican, Mexican, and Cuban. This article reports on the difficulty in recruiting Mexican women. One hundred forty-three women called the study hotline to inquire about participation. Seventy-six callers were ineligible for the study. Thirty-four percent (n = 26) of ineligibles were Mexican women; within this group, 62% (n = 16) were unable to participate because they did not know the cancer site of their first degree relative. Inclusion criteria requiring knowledge of family history of cancer for behavioral research may be too stringent. The socio-cultural norms of Mexican families may not include discussions of cancer specifics. This study demonstrates Mexican women may have limited knowledge about their family history of cancer. Considerations of these knowledge limitations should be built into cancer genetics-related research. Referral criteria to assess the risk of hereditary breast and ovarian cancer by cancer genetics professionals are predicated on the patient providing details about cancer within multiple generations of family members, thus, posing a barrier for Mexican women who may have limited knowledge of their family history of cancer.

A pilot study of knowledge and interest of genetic counseling and testing for hereditary breast and ovarian cancer syndrome among Puerto Rican women.

This study explored baseline levels of knowledge and attitude toward genetic testing (GT) for hereditary breast and ovarian cancer among Puerto Rican women. A secondary aim was to evaluate whether these factors differed between respondents in Puerto Rico and Tampa. Puerto Rican women with a personal or family history of breast or ovarian cancer who live in Puerto Rico (n = 25) and Tampa (n = 20) were interviewed. Both groups were interested in obtaining GT; women living in Puerto Rico were more likely to report they would get GT within 6 months (p = 0.005). The most commonly cited barrier was cost; the most commonly cited facilitator was provider recommendation. There was no difference in overall knowledge between Tampa (M = 5.15, SD = 1.63) and Puerto Rico (M = 5.00, SD = 1.87) participants (p = 0.78). Involving health care providers in recruitment and highlighting that GT may be available at minimal or no cost in the USA and Puerto Rico may facilitate participation.

A pilot study of hereditary breast and ovarian knowledge among a multiethnic group of Hispanic women with a personal or family history of cancer.

PURPOSE: To examine knowledge about hereditary breast and ovarian cancer (HBOC) among Mexican, Puerto Rican, and Cuban women. METHODS: Women (age range, 18-65 years) with a personal or family history of breast or ovarian cancer were recruited to a mixed methods study using community-based approaches. Fifty-three women participated in the study: 16 Mexicans, 20 Puerto Ricans, and 17 Cubans. The majority of women (64.2%) were born outside the United States. All questions were interviewer administered in Spanish or English. HBOC knowledge was measured using an 11-item instrument developed by the National Center for Human Genome Research. We evaluated whether differences in knowledge varied as a function of Hispanic subethnicity, demographic characteristics, and medical and acculturation characteristics using a series of one-way analysis of variances. RESULTS: The percentage of correct responses on the knowledge instrument ranged from 9.4% to 73.6% (median number of correct responses = 45%). Knowledge did not significantly differ by Hispanic subethnicity (p = 0.51). Exploratory analysis revealed lower knowledge in women with a personal history of cancer (p = 0.03). CONCLUSION: Our study provides important information about characteristics associated with lower levels of knowledge and specific areas related to HBOC where additional education may be warranted in the Hispanic community.