Impact of Demographics and Neighborhood Socioeconomic Variables on Clinical Trial Participation in Non-Hodgkin Lymphoma.

Prior studies have demonstrated that certain populations including older patients, racial/ethnic minority groups, and women are underrepresented in clinical trials. We performed a retrospective analysis of patients with Non-Hodgkin Lymphoma (NHL) seen at MD Anderson Cancer Center (MDACC) to investigate the association between trial participation, race/ethnicity, travel distance and neighborhood socioeconomic status (nSES). Using patient addresses, we ascertained nSES variables on educational attainment, income, poverty, racial composition and housing at the census tract (CT) level. We also performed geospatial analysis to determine the geographic distribution of clinical trial participants and distance from patient residence to MDACC. We examined 3146 consecutive adult patients with NHL seen between January 2017 and December 2020. The study cohort was predominantly male and non-Hispanic white (NHW). The most common insurance types were private insurance and Medicare; only 1.1% of patients had Medicaid. There was a high overall participation rate of 30.5% with 20.9% enrolled in therapeutic trials. In univariate analyses, lower participation rates were associated with lower nSES including higher poverty rates and living in crowded households. Racial composition of CT was not associated with differences in trial participation. In multivariable analysis, trial participation varied significantly by histology and participation declined nonlinearly with age in the overall, follicular lymphoma and diffuse large B-cell lymphoma (DLBCL) models. In the DLBCL subset, Hispanic patients had lower odds of participation than Whites (odds ratio 0.36 [95% confidence interval 0.21 - 0.62 p=0.001). In our large academic cohort, race, gender, insurance type, and nSES were not associated with trial participation, whereas age and diagnosis were.

Institution-Wide Retreats Foster Organizational Learning and Action at a Comprehensive Cancer Center.

Providing safe and informed healthcare for sexual and gender minority (SGM) individuals with cancer is stymied by the lack of sexual orientation and gender identity (SOGI) data reliably available in health records and by insufficient training for staff. Approaches that support institutional learning, especially around sensitive topics, are essential for hospitals seeking to improve practices impacting patient safety and research. We engineered annual institutional retreats to identify and unify stakeholders, promote awareness of gaps and needs, identify initiatives, minimize redundant projects, and coordinate efforts that promote improvements in SGM cancer care, education, and research. The 2022 and 2023 retreats employed a 4-h hybrid format allowing virtual and in-person engagement. Retreat organizers facilitated small-group discussions for brainstorming among participants. We performed descriptive statistics from retreat evaluations. The retreats engaged 104 attendees from distinct departments and roles. Participants expressed robust satisfaction, commending the retreat organization and content quality. Notably, the first retreat yielded leadership endorsement and funding for a Quality Improvement pilot to standardize SOGI data collection and clinical staff training. The second retreat provided a platform for updates on focused efforts across the institution and for receiving direction regarding national best practices for SGM care and research. We report the processes and outcomes of institution-wide retreats, which served as a platform for identifying gaps in organizational healthcare practices and research for SGM individuals with cancer. The strategies described herein may be readily scaled at other cancer hospitals seeking to learn and enact system-wide practice changes that support the needs of SGM patients and families.

Engaging the Asian American Community to Address Cancer Burden: Experiences and Lessons Learned.

BACKGROUND: Reducing cancer health disparities in Asian Americans requires orchestrated efforts and partnerships. OBJECTIVES: To describe the approach used by the University of Texas MD Anderson Cancer Center, HOPE Clinic, and Asian American organizations to understand and engage Houston's Asian American communities in cancer research, as well as to share lessons learned. METHODS: The community-academic-medical partnership used community-based research principles to build the partnership, form the community advisory board, conduct a community needs assessment, and offer cancer prevention engagement and education. RESULTS: Some lessons learned included balancing language needs with limited resources, incorporating more time and resources to conduct health research in an ethnically diverse community, and promoting awareness of research and its role in cancer prevention in Asian American communities. CONCLUSIONS: Community-academic-medical partnerships are promising ways to engage the community, draw on combined expertise, and create research and programs that are scientifically strong and meaningful to the community.

A primer for cancer research programs on defining and evaluating the catchment area and evaluating minority clinical trials recruitment.

National Cancer Institute (NCI) designated cancer centers are charged with reducing disparities, improving cancer-related health outcomes, and increasing clinical trial participation for the catchment area population. Succeeding in this endeavor requires a clear definition of each cancer center's geographic catchment area as well as the demographic characteristics of the populations residing in the catchment area. For this reason, the definition of the catchment area is now a required element of NCI grant applications. This primer provides detailed information related to the definition of cancer centers' catchment areas and provides a case example from the University of Texas MD Anderson Cancer Center to highlight best practice strategies for compiling and interpreting cancer health statistics for the catchment area.

Patient-Clinician Communication: American Society of Clinical Oncology Consensus Guideline.

Purpose To provide guidance to oncology clinicians on how to use effective communication to optimize the patient-clinician relationship, patient and clinician well-being, and family well-being. Methods ASCO convened a multidisciplinary panel of medical oncology, psychiatry, nursing, hospice and palliative medicine, communication skills, health disparities, and advocacy experts to produce recommendations. Guideline development involved a systematic review of the literature and a formal consensus process. The systematic review focused on guidelines, systematic reviews and meta-analyses, and randomized controlled trials published from 2006 through October 1, 2016. Results The systematic review included 47 publications. With the exception of clinician training in communication skills, evidence for many of the clinical questions was limited. Draft recommendations underwent two rounds of consensus voting before being finalized. Recommendations In addition to providing guidance regarding core communication skills and tasks that apply across the continuum of cancer care, recommendations address specific topics, such as discussion of goals of care and prognosis, treatment selection, end-of-life care, facilitating family involvement in care, and clinician training in communication skills. Recommendations are accompanied by suggested strategies for implementation. Additional information is available at www.asco.org/supportive-care-guidelines and www.asco.org/guidelineswiki .

Community Perceptions of Biobanking Participation: A Qualitative Study among Mexican-Americans in Three Texas Cities.

BACKGROUND: Most biospecimens in the US are collected from non-Hispanic Whites, limiting the generalizability of findings. There is a need to increase participation in biobanking among ethnic and racial minorities. The purpose of this study was to use qualitative methods to identify factors that may influence Mexican-American individuals' willingness to participate in biobanking. METHODS: We conducted 15 focus groups in three Texas cities with Mexican-American individuals, in both Spanish and English. RESULTS: Lack of knowledge about medical research and biobanks, lack of information about the specifics of biobanking participation, lack of communication of the results, fear of pain or harm, and distrust of the healthcare system or health research were identified as barriers to biobanking participation. Facilitators to participation were altruism, safety, understanding biobanking procedures and purposes, perceived benefits to participation, and culturally appropriate recruitment strategies. Although Mexican-Americans living in Texas are willing to donate biospecimens for altruistic reasons, such as helping society or advancing science, they want more information about what biobanking entails. They want to be assured that participation will not cause them harm and that the research is conducted with good intentions. CONCLUSION: Results from this study can inform educational materials or interventions to increase Hispanic participation in biobanking.

Five National Cancer Institute-designated cancer centers' data collection on racial/ethnic minority participation in therapeutic trials: a current view and opportunities for improvement.

BACKGROUND: To ensure that National Institutes of Health-funded research is relevant to the population's needs, specific emphasis on proportional representation of minority/sex groups into National Cancer Institute (NCI) cancer centers' clinical research programs is reported to the NCI. METHODS: EMPaCT investigators at 5 regionally diverse comprehensive cancer centers compared data reported to the NCI for their most recent Cancer Center Support Grant competitive renewal to assess and compare the centers' catchment area designations, data definitions, data elements, collection processes, reporting, and performance regarding proportional representation of race/ethnicity and sex subsets. RESULTS: Cancer centers' catchment area definitions differed widely in terms of their cancer patient versus general population specificity, levels of specificity, and geographic coverage. Racial/ethnic categories were similar, yet were defined differently, across institutions. Patients' socioeconomic status and insurance status were inconsistently captured across the 5 centers. CONCLUSIONS: Catchment area definitions and the collection of patient-level demographic factors varied widely across the 5 comprehensive cancer centers. This challenged the assessment of success by cancer centers in accruing representative populations into the cancer research enterprise. Accrual of minorities was less than desired for at least 1 racial/ethnic subcategory at 4 of the 5 centers. Institutions should clearly and consistently declare their primary catchment area and the rationale and should report how race/ethnicity and sex are defined, determined, collected, and reported. More standardized, frequent, consistent collection, reporting, and review of these data are recommended, as is a commitment to collecting socioeconomic data, given that socioeconomic status is a primary driver of cancer disparities in the United States.

Effect of age and race on quality of life in young breast cancer survivors.

BACKGROUND: Given their early age at diagnosis, young breast cancer survivors (YBCSs) face issues that differ widely from their older counterparts. PATIENTS AND METHODS: We mailed a survey to 2209 patients who were ≤ 45 years at the time of breast cancer (BC) diagnosis. Each survey was composed of the Quality of Life in Adult Cancer Survivors instrument, Menopause Symptom Scale, and questions aimed at obtaining pertinent background information. RESULTS: One thousand ninety patients completed the survey. Mean age at time of diagnosis was 39.5 years; median years from diagnosis was 6.6 years. Distress related to vaginal dryness (P = .0002) and pain from intercourse (P = .0014) was significantly higher in patients who were < 5 years from diagnosis compared with those > 10 years from diagnosis. In the area of financial problems, black women had greater distress than did white women (P = .0010). Compared with white women, Hispanic women had worse family distress scores (P = .0028) and summary cancer-specific scores (P = .0076). Patients > 10 years from diagnosis had less sexual interest (P = .003) than did women who were closer to diagnosis. Women ≥ 40 years at diagnosis had significantly lower sexual interest (P = .0016) than did women < 40 years. Stage and neoadjuvant chemotherapy did not have a significant effect on quality of life (QOL). CONCLUSION: Even in comparison to stage and neoadjuvant chemotherapy, race, age at diagnosis, and time from diagnosis have significant long-term effects on QOL after treatment for BC.

Reaching and treating Spanish-speaking smokers through the National Cancer Institute's Cancer Information Service. A randomized controlled trial.

Although the prevalence of smoking is lower among Hispanics than among the general population, smoking still levies a heavy public health burden on this underserved group. The current study, Adiós al Fumar (Goodbye to Smoking), was designed to increase the reach of the Spanish-language smoking cessation counseling service provided by the National Cancer Institute's Cancer Information Service (CIS) and to evaluate the efficacy of a culturally sensitive, proactive, behavioral treatment program among Spanish-speaking smokers. Adiós was a 2-group randomized clinical trial evaluating a telephone-based smoking cessation intervention. Spanish-speaking smokers (N = 297) were randomized to receive either standard counseling or enhanced counseling (EC). Paid media was used to increase the reach of the Spanish-language smoking cessation services offered by the CIS. The Adiós sample was of very low socioeconomic status (SES), and more than 90% were immigrants. Calls to the CIS requesting smoking cessation help in Spanish increased from 0.39 calls to 17.8 calls per month. The unadjusted effect of EC only approached significance (OR = 2.4, P = .077), but became significant after controlling for demographic and tobacco-related variables (OR = 3.8, P = .048). Adiós al Fumar demonstrated that it is possible to reach, retain, and deliver an adequate dose of treatment to a very low SES population that has traditionally been viewed as difficult to reach and hard to follow. Moreover, the findings suggest that a proactive, telephone-counseling program, based on the Treating Tobacco Use and Dependence Clinical Practice Guideline and adapted to be culturally appropriate for Hispanics, is effective. Cancer 2007. (c) 2006 American Cancer Society.

The efficacy of tailored print materials in promoting colorectal cancer screening: results from a randomized trial involving callers to the National Cancer Institute's Cancer Information Service.

In this large randomized trial among callers to the Cancer Information Service (CIS), tailored print materials were tested for efficacy in promoting colorectal cancer (CRC) screening (fecal occult blood test [FOBT], flexible sigmoidoscopy, or colonoscopy). All participants completed baseline interviews at the end of their usual service calls to the CIS, as well as short-term (6-month) and longer-term (14-month) telephone follow-up interviews. The study sample (n = 4,014) was restricted to English-speaking CIS callers 50 + years of age, who would be eligible for CRC screening at 14 months follow-up and did not call the CIS about CRC or CRC screening. Four experimental conditions were compared: a single untailored (SU) mailout of print material (the control condition); a single tailored (ST) mailout of print material; four (multiple) tailored (MT) mailouts of print materials spanning 12 months, all of which were tailored to information obtained at baseline; and four (multiple) retailored (MRT) mailouts also spanning 12 months, with retailoring of the print materials (mailouts 2, 3, and 4) based on updated information obtained from the 6-month follow-up interviews. Consistent with the main hypothesis of this trial, a significant linear trend across the SU, ST, MT, and MRT groups was found at 14 months (42%, 44%, 51%, and 48%, respectively, p = 0.05). Only for MT was there a significant difference compared with SU (p = 0.03) for the sample as a whole, while no differences were found for MT vs. MRT at 14 months. Significant moderator effects in the predicted direction were found among females, younger participants, and among those with a history of CRC screening, all of which involved the SU vs. MT MRT comparisons. Only among younger participants (ages 50-59) was there a difference between SU vs. ST at 14 months. Given these results, we conclude from this trial the following: (1) the MRT intervention failed to show added benefit beyond the MT intervention, (2) the significant intervention effects involving the MT and MRT conditions can be explained by tailoring and/or the longitudinal nature of both interventions, and (3) the most compelling evidence in support of tailoring was found for the ST condition among younger participants, where a significant need for interventions exists at the national level. Directions for future research are discussed in light of the results summarized above.

A case study in dissemination: lessons learned from a pilot study involving the National Cancer Institute's Cancer Information Service.

The Cancer Information Service Research Consortium (CISRC) was funded by the National Cancer Institute to disseminate as a pilot study a longitudinally tailored print intervention to promote the 5 A Day for Better Health program among callers to the National Cancer Institute's Cancer Information Service (CIS). Using a one-group (intervention-only) study design, 1,022 eligible CIS callers were enrolled to receive the intervention consisting of four mailings of tailored print materials over a 3-month period. Program evaluation focused on process and implementation evaluation, including adherence to the baseline interviews by CIS information specialists based on live-call monitoring (n = 55 eligible callers), and the timeliness of the intervention mailouts (4,088 scheduled mailouts). Adherence to the baseline interviews by CIS information specialists was extremely high, exceeding 90% for all indicators of quality control. Of the 4,088 intervention mailings, 75% occurred on or before the target date, while 95% occurred within 21 days of the target date. All delays in the scheduled mailouts occurred in the first mailing, due to changes made in the production process (batch printing of all tailored print materials at baseline). This change required additional system upgrades and more intensive and time-consuming quality control than originally anticipated, which was exacerbated by the faster-than-expected accrual of eligible participants. Based on this pilot study, the CIS is now positioned for widespread dissemination of the 5 A Day tailored print intervention. Several key lessons learned are also identified to facilitate the transition from research to dissemination.

Consumer Health Information for Asians (CHIA): a collaborative project.

According to the 2000 United States Census, the Asian population in Houston, Texas, has increased more than 67% in the last ten years. To supplement an already active consumer health information program, the staff of the Houston Academy of Medicine-Texas Medical Center Library worked with community partners to bring health information to predominantly Asian neighborhoods. Brochures on health topics of concern to the Asian community were translated and placed in eight informational kiosks in Asian centers such as temples and an Asian grocery store. A press conference and a ribbon cutting ceremony were held to debut the kiosks and to introduce the Consumer Health Information for Asians (CHIA) program. Project goals for the future include digitizing the translated brochures, mounting them on the Houston HealthWays Website, and developing touch-screen kiosks. The CHIA group is investigating adding health resources in other Asian languages, as well as Spanish. Funding for this project has come from outside sources rather than from the regular library budget.