Transcreation matters: A learner centric participatory approach for adapting cancer prevention messages for Latinos.

BACKGROUND: Advancing health equity requires innovative patient education approaches for adapting English-language evidence-based interventions (EBIs) to resonate with multicultural, multilingual audiences. OBJECTIVE: Examine the benefit, functionality, and practical considerations of transcreation (translation + cultural adaptation) as a critical and salient learner-centric process for developing a Spanish-language intervention (photonovella + video): Un examen sencillo para un colon saludable (A simple test for a healthy colon). PATIENT/COMMUNITY INVOLVEMENT: We involved patients/community members in a participatory reflective process, from problem identification to intervention design, development, delivery, and impact measurement. METHODS: A community-based participatory research (CBPR) approach involving formative research plus systematic iterative pretesting and learner verification checks augmented by a community advisory board guided the transcreation processes. RESULTS: Data collected using a learner-centric approach effectively produced a new Spanish-language EBI and substantiated the value of co-learner/co-design methods. Learner-centric methods identified cultural nuances that were treated as knowledge and integrated into the intervention materials and study design. Pilot testing of the intervention among Latinos receiving care at community clinics demonstrated improved initial colorectal cancer screening uptake, awareness, and perceived susceptibility. DISCUSSION: Inherent in the transcreation process was learner involvement that informed essential modification and adaptation of the materials. The transcreation methods led to the development of a culturally salient intervention that maintained theoretical integrity and message intent as well as behavioral activation. Findings have broad implications for the creation and transfer of EBIs to new audiences for greater adoption, engagement, and 'reach' of interventions. PRACTICAL VALUE: Transcreation aligns with a growing paradigm shift in health communication science that brings to light the beneficial effect that construction and application of cultural knowledge has on patient education toward health equity.

Perceived Stress and Impact on Role Functioning in University Students with Migraine-Like Headaches during COVID-19.

Migraines, a chronic disease, can be debilitating in university students, affecting their academic performance, attendance, and social interactions. The purpose of this study was to identify the impact of COVID-19 on the role functioning and perceived stress levels of students suffering from migraine-like headaches. METHODS: Two identical cross-sectional surveys were sent to students in Fall 2019 and Spring 2021 at a mid-sized university in the U.S. The students were queried on the headache impact scale (HIT-6) and perceived stress scale (PSS-10). Associations between the migraine-like headaches, severity of the headaches, stress levels, and headache impacts on the individuals' role functioning were analyzed. RESULTS: The average age of the respondents (n = 721) was 20.81 ± 4.32 years in 2019 and (n = 520) 20.95 ± 3.19 years in 2021. A difference (p = 0.044) was found in the HIT-6 score <49 category. The other categories of the HIT-6 and the PSS-10 were not significant. CONCLUSIONS: During COVID-19, more students answered that their migraine-like headaches had lower impacts on their role functioning, thus suggesting that the students were having less severe migraines. A trend was seen for student's stress levels, indicating a decrease from 2019 to 2021. Furthermore, our results showed that the impact of headaches and stress levels slightly declined throughout the pandemic.

Analytic hierarchy process: An innovative technique for culturally tailoring evidence-based interventions to reduce health disparities.

Latinos in the United States represent a disproportionate burden of illness and disease and face barriers to accessing health care and related resources. Culturally tailored, evidence-based interventions hold promise in addressing many of these challenges. Yet, ensuring patient voice is vital in the successful development and implementation of such interventions. Thus, this paper examines the application of analytic hierarchy process (AHP) to inform the augmentation and implementation of an evidence-based chronic disease self-management programme for underserved Latinos living with both minor depression and chronic illness. The process of AHP allows for direct input from the individuals that would utilize such a programme, including afflicted individuals, their family members and the health educators/promotores that would be responsible for implementation. Specifically, 45 participants, including 15 individuals with chronic disease, 15 family members/caregivers and 15 promotores, partook in the Stakeholder Values Questionnaire, which elicited preferences and values regarding major goals, processes and content for the intervention. AHP was employed to analyse pairwise comparison ratings and to determine differences and similarities across stakeholder groups. This analytical technique allowed for the adaptation of the EBI to stakeholders' specific priorities and preferences and facilitated complex decision-making. Findings not only shed light on similarities and differences between stakeholder groups, but also the magnitude of these priorities and preferences and allowed the intervention to be driven by the participants, themselves. Applying AHP was a unique opportunity to optimize the decision-making process to inform cultural adaptation of an EBI while considering multiple viewpoints systematically.

'Simple and easy:' providers' and latinos' perceptions of the fecal immunochemical test (FIT) for colorectal cancer screening.

Objective: Colorectal cancer (CRC) screening efforts have effectively reduced CRC morbidity and mortality, yet screening remains relatively low among Latinos. The study's purpose was to document the awareness/knowledge of Fecal Immunochemical Test (FIT) among Latinos, gain better understanding of patient and health care provider perceptions about FIT, and explore the feasibility of adoption/uptake.Design/Methods: The study was guided by qualitative, ethnography design and methods. Eight focus groups (FG) with patients who self-identified as Hispanic/Latino between 50-75 years of age and key informant interviews with providers (N = 10) were conducted followed by a brief demographic questionnaire.Results: Awareness levels varied based on prior screening experiences among patients and providers. Both patients and providers believed the FIT is simple and easy to use; although, a minority of patients expressed doubts about the efficacy of the FIT when compared to colonoscopy.Conclusions: Despite the increasing acceptance of the FIT among the health care community, a significant lag time still exists among our study's populations. Study findings speak to novelty of the FIT test among underserved populations and the health disparity gap between health innovations/discoveries. Increased awareness and education efforts about the efficacy coupled with information about its accessibility, ease, and user instructions may increase the adoption of FIT.

A Systematic Review of U.S.-Based Colorectal Cancer Screening Uptake Intervention Systematic Reviews: Available Evidence and Lessons Learned for Research and Practice.

Background: We examined colorectal cancer screening (CRCS) intervention effectiveness, through the effect sizes associated with: (1) screening modality, (2) intervention level (e.g., client-directed), and (3) intervention component (e.g. client reminders) within published CRCS intervention systematic reviews (SRs). Methods: A search of peer-reviewed CRCS SRs that were written in English was employed utilizing five databases: CINAHL, Cochrane Library, rTIPS, PubMed, and PsycINFO EBSCOHOST. SRs that included CRCS interventions with a randomized controlled trial, quasi-experimental, or single arm design were eligible. Data on effect sizes by screening modality, intervention level, and intervention component were extracted and synthesized. Results: There were 16 eligible CRCS intervention SRs that included 116 studies published between 1986 and 2013. Reviews organized data by CRCS screening modality, or intervention component. Effect size reporting varied by format (i.e., ranges, medians of multiple studies, or effect size per study), and groupings of modalities and components. Overall, the largest effect sizes were for studies that utilized a combination of colonoscopy, fecal occult blood test (FOBT), and sigmoidoscopy as screening options (16-45 percentage point difference). Conclusions: Evidence suggests that CRCS interventions which include a combination of screening modalities may be most effective. This is the first SR to examine effect sizes of published CRCS SRs. However, because some SRs did not report effect sizes and there were tremendous variability reporting formats among those that did, a standard reporting format is warranted. Synthesizing findings can contribute to improved knowledge of evidence-based best-practices, direct translation of findings into policy and practice, and guide further research in CRCS.

Florida Populations Most at Risk of Not Being Up to Date With Colorectal Cancer Screening.

INTRODUCTION: The purpose of this study was to examine the characteristics of populations at risk of not being up to date on colorectal cancer screening in Florida. METHODS: We used Exhaustive Chi-squared Automatic Interaction Detection, a classification tree analysis, to identify subgroups not up to date with colorectal cancer screening using the 2013 Florida Behavioral Risk Factor Surveillance System. The data set was restricted to adults aged 50 to 75 years (n = 14,756). RESULTS: Only 65.5% of the sample was up to date on colorectal cancer screening. Having no insurance and having a primary care provider were the most significant predictors of not being up to date on screening. The highest risk subgroups were 1) respondents with no insurance and no primary care provider, regardless of their employment status (screening rate, 12.1%-23.7%); 2) respondents with no insurance but had a primary care provider and were employed (screening rate, 32.3%); and 3) respondents with insurance, who were younger than 55 years, and who were current smokers (screening rate, 42.0%). CONCLUSION: Some populations in Florida are at high risk for not being up to date on colorectal cancer screening. To achieve Healthy People 2020 goals, interventions may need to be further tailored to target these subgroups.

Application of mixed-methods design in community-engaged research: Lessons learned from an evidence-based intervention for Latinos with chronic illness and minor depression.

The purpose of this paper is to share lessons learned from a collaborative, community-informed mixed-methods approach to adapting an evidence-based intervention to meet the needs of Latinos with chronic disease and minor depression and their family members. Mixed-methods informed by community-based participatory research (CBPR) were employed to triangulate multiple stakeholders' perceptions of facilitators and barriers of implementing the adapted intervention in community settings. Community partners provided an insider perspective to overcome methodological challenges. The study's community informed mixed-methods: research approach offered advantages to a single research methodology by expanding or confirming research findings and engaging multiple stakeholders in data collection. This approach also allowed community partners to collaborate with academic partners in key research decisions.

Utilization and Outcomes of BRCA Genetic Testing and Counseling in a National Commercially Insured Population: The ABOUT Study.

IMPORTANCE: BRCA genetic testing has substantial public health impact, yet little is known of the real-world experiences of the more than 100 000 Americans undergoing testing annually. OBJECTIVE: To identify factors associated with use of BRCA testing, assess whether delivery of genetic counseling and testing services adheres to professional guidelines, and measure the impact on patient-reported outcomes. DESIGN, SETTING, AND PARTICIPANTS: The American BRCA Outcomes and Utilization of Testing (ABOUT) Study analyzed data from a consecutive national series of 11 159 women whose clinicians ordered BRCA testing between December 2011 and December 2012. Aetna mailed recruitment information across the United States to commercial health plan members whose clinicians had ordered BRCA testing. A total of 3874 women (34.7%) completed questionnaires. Deidentified clinician-reported data from all respondents and a random sample of 2613 nonrespondents were also analyzed. MAIN OUTCOMES AND MEASURES: The proportion of eligible participants who met testing criteria and respondents' report of receiving genetic counseling by a genetics clinician and its association with BRCA knowledge, understanding, and satisfaction were assessed. RESULTS: Among 3628 women respondents whose clinicians ordered comprehensive BRCA testing, most were white non-Hispanic (2502 [69.0%]), college educated (2953 [81.4%]), married (2751 [75.8%]), and had higher incomes (2011 [55.4%]). Approximately 16.4% (596) did not meet testing criteria. Mutations were identified in 161 (5.3%) of these women who received comprehensive testing. Only 1334 (36.8%) reported receiving genetic counseling from a genetics clinician prior to testing; the lowest rates (130 [12.3%]) were among patients of obstetrician/gynecologists. The most commonly reported reason for not receiving this clinical service was lack of clinician recommendation. Those who received it demonstrated greater knowledge about BRCA (mean score difference adjusted for demographics and clinician specialty, ß = 0.99 [95% CI, 0.83-1.14]; P < .001) and expressed greater understanding (ß = 0.47 [95% CI, 0.41-0.54]; P < .001) and satisfaction (ß = 2.21 [95% CI, 1.60-2.81]; P < .001). CONCLUSIONS AND RELEVANCE: Despite improved patient knowledge, understanding, and satisfaction among patients who receive genetic counseling provided by a genetics clinician, as well as multiple guidelines emphasizing the importance of genetic counseling, most US women undergoing BRCA genetic testing do not receive this clinical service. Lack of physician recommendation is the most commonly reported reason. These findings demonstrate important gaps in clinical genetics services. Recently mandated coverage of genetic counseling services as a preventive service without patient cost sharing should contribute to improving clinical genetics services and associated outcomes in the future.

American BRCA Outcomes and Utilization of Testing (ABOUT) study: a pragmatic research model that incorporates personalized medicine/patient-centered outcomes in a real world setting.

Research to date regarding identification and management of hereditary breast and ovarian cancer syndrome (HBOC) in the U.S. has been confined primarily to academic center-based studies with limited patient engagement. To begin to understand and address the current gaps and disparities in delivery of services for the appropriate identification and optimal risk management of individuals with HBOC, we designed and have initiated the American BRCA Outcomes and Utilization of Testing (ABOUT) Study. ABOUT relies on a collaborative patient advocacy, academic and industry partnership to recruit and engage U.S. individuals who are at increased risk for HBOC and investigate their experiences, decisions and outcomes. It utilizes an extensive research infrastructure, including an interactive web-based data system and electronic interfaces for secure online participation and automated data exchange. We describe the novel recruitment approach that was designed for collaboration with a national commercial health plan partner to identify all individuals for whom a healthcare provider orders a BRCA test and mail to each individual an invitation to participate and study packet. The study packet contains detailed information about the study, a baseline questionnaire and informed consent for participation in the study, for release of relevant medical and health plan records and for ongoing research engagement. This approach employs patient-reported, laboratory-reported and health plan-reported outcomes and facilitates longitudinal engagement. We believe that the type of innovative methodology and collaborative framework we have developed for ABOUT is an ideal foundation for a patient-powered research network. This approach can make substantial contributions to identifying current and best practices in HBOC, leading to improved strategies for clinical care and optimal health outcomes among individuals with high inherited risk for cancer.

Risk factors associated with increased depressive symptoms among Latinas diagnosed with breast cancer within 5 years of survivorship.

BACKGROUND: Co-occurring depression in women with cancer can complicate cancer treatment, lead to poor treatment adherence for both conditions, and decrease survival if left untreated. The purpose of this study was to explore risk factors for depression among Latina breast cancer survivors. METHODS: A closed-ended questionnaire was administered by telephone to 68 Latinas diagnosed with breast cancer within the past 5 years. Depression symptoms were measured using the Patient Health Questionaire-9 with the Endicott substitutive criteria applied. The Cognitive Appraisal Health Scale and the Brief COPE were used to measure appraisal and coping. Descriptive statistics, bivariate and multiple linear regression analyses were completed. RESULTS: Approximately 45.6% of women reported depressive symptoms. Multivariate analyses showed that a cognitive appraisal variable (decreased challenge or the potential to overcome), coping variables (increased acceptance, less positive reframing, less active coping, less use of emotional support, substance use and more self-blame), poor body image, less family and peer support to be significantly associated with an increased risk for depression. Intrapersonal variables accounted for the greatest explained variance (69%). CONCLUSIONS: This study identified several risk factors for depression. Study findings highlight the need for intervention programs to help women normalize emotions and thoughts related to cancer and its treatments, and to improve their cognitive abilities to overcome, accept, and positively reframe cancer and other difficult situations women face throughout the cancer continuum. The importance of family and peer support to improve depressive symptoms was also evident.

Use and helpfulness of self-administered stress management therapy in patients undergoing cancer chemotherapy in community clinical settings.

The purpose of this multicenter longitudinal randomized controlled trial was to examine the efficacy of self-administered stress management training (SSMT) in improving quality of life and reducing psychological distress among patients receiving cancer chemotherapy. Participants were randomized to SSMT (n = 111) or usual psychosocial care only (n = 109). Mixed linear modeling demonstrated no significant improvements in primary outcome measures; however, participants assigned to SSMT reported using significantly more relaxation techniques (p < 0.0001), showed improvements on emotional adjustment scores, and demonstrated a stabilizing effect on the functional adjustment scores. Findings highlight the usefulness of SSMT in community clinical settings.

Limited English proficiency as a barrier to mental health service use: a study of Latino and Asian immigrants with psychiatric disorders.

Language barriers pose problems in mental health care for foreign-born individuals in the United States. Immigrants with psychiatric disorders may be at particular risk but are currently understudied. The purpose of this study was to examine the effect of limited English proficiency (LEP) on mental health service use among immigrant adults with psychiatric disorders. Drawn from the National Latino and Asian American Study (NLAAS), Latino and Asian immigrant adults aged 18-86 with any instrument-determined mood, anxiety, and substance use disorder (n = 372) were included in the present analysis. Results from hierarchical logistic regression analyses showed that having health insurance, poor self-rated mental health, and more psychiatric disorders were independently associated with higher probability of mental health service use in the Latino group. After controlling for all background characteristics and mental health need factors, LEP significantly decreased odds of mental health service use among Latino immigrants. None of the factors including LEP predicted mental health service use among Asian immigrants, who were also the least likely to access such services. LEP was a barrier to mental health service use among Latino immigrants with psychiatric disorders. This study suggests that future approaches to interventions might be well advised to include not only enhancing the availability of bilingual service providers and interpretation services but also increasing awareness of such options for at least Latino immigrants. In addition, further investigation is needed to identify factors that can enhance access to mental health care services among Asians.

Development of a cancer camp for adult Spanish-speaking survivors: lessons learned from Camp Alegria.

BACKGROUND: The serious psychosocial and emotional side effects of cancer and its treatment negatively affect the lives of breast cancer survivors. METHODS: Camp Alegria, in 2005, was the first oncology camp offered to Latina breast cancer survivors. This 3-day camp (N = 58 women) provided a culturally and linguistically relevant program that empowered Spanish-speaking women diagnosed with breast cancer and gave them an opportunity to gain support from other cancer survivors facing similar challenges. RESULTS: Process evaluation results illustrate high satisfaction with the overall program, format, educational and recreational activities. CONCLUSION: This paper describes the camp development, experiences, and lessons learned.