"I couldn't connect the wires in my brain." Young adult cancer survivors' experience with cognitive functioning.

OBJECTIVE: There is a dearth of literature describing young adult (YA) cancer survivors' experiences with cancer-related cognitive impairment (CRCI). We aimed to elucidate CRCI among YA cancer survivors and identify potentially modifiable risk factors. METHODS: We conducted individual qualitative interviews with YA cancer survivors aged 18-30 years at study enrollment and used applied thematic analysis to identify themes across three topics (i.e., affected cognitive abilities, risk and protective factors influencing the impact of CRCI, and strategies for coping with CRCI). RESULTS: YA cancer survivors (N = 20) were, on average, 23 years old at diagnosis and 26 years old when interviewed. Diverse cancer types and treatments were represented; most participants (85%) had completed cancer treatment. Participants described experiences across three qualitative topics: (1) affected cognitive abilities (i.e., concentration and attention, prospective memory, and long-term memory), (2) Risk factors (i.e., fatigue, sleep problems, mood, stress/distractions, and social isolation) and protective factors (i.e., social support), and (3) coping strategies, including practical strategies that helped build self-efficacy (e.g., writing things down, reducing distractions), beneficial emotion-focused coping strategies (e.g., focus on health, faith/religion), strategies with mixed effects (i.e., apps/games, medications/supplements, and yoga), and "powering through" strategies that exacerbated stress. CONCLUSIONS: YA cancer survivors experience enduring cognitive difficulties after treatment. Specific concerns highlight the importance of attention and executive functioning impairments, long-term memory recall, and sensitivity to distractions. Future work is needed to improve assessment and treatment of CRCI among YA cancer survivors.

Navigating norms and expectations: the influence of culture on Latino couples and their interpersonal communication and coping post-breast cancer diagnosis.

OBJECTIVES: Cultural norms shape expectations, care, and communication. Effective interpersonal communication is a prominent predictor of patient-partner cancer management, improving the overall quality of life for the dyad by increasing their ability to cope with cancer. However, couples-based cancer interventions often do not consider cultural factors. Additionally, although Latinas have a high incidence of breast cancer, few studies focus on Latino couples and the influence of culture in cancer care interventions. This study focuses on understanding how Latino culture's norms and expectations influence how couples communicate and cope post-breast cancer diagnosis. DESIGN: This study conducted interviews and focus groups with a purposive sample of Spanish-speaking Latina breast cancer survivors (N = 21) and intimate partners (N = 5). In the focus group and interviews, participants were asked about the influence cancer had on their relationship, with specific questions focusing on communication within the dyad. The study team used CARV: Community-Engaged Adaptation with Rapid Analysis and Visualization framework to identify cultural considerations and recurring themes. RESULTS: The cross-cutting cultural considerations and themes found were: the negative influence of gendered and social norms on managing emotions and coping; the silent struggle with physical intimacy; and the inability to discuss the topic - or even say the word 'cancer.' CONCLUSION: Understanding the role of Latino culture in how couples cope with and communicate about cancer post-diagnosis is essential. This understanding will help strengthen the dyad by assisting with positive interpersonal support, which contributes to a better quality of life. These findings will also help providers assist dyads in navigating the cancer diagnosis and journey, helping to lessen the interpersonal stress and tensions that can occur after diagnosis.

Psychological Impact of COVID-19 on Oncology Patients: Perceptions of Oncology Health Care Providers.

The COVID-19 pandemic profoundly impacted psychological well-being worldwide. Oncology health care professionals' (OHCPs') perceptions of psychological effects of COVID-19 among people in active cancer treatment were explored. Semi-structured interviews with a purposive sample of OHCPs actively providing care were conducted. Interviews were audio-recorded, transcribed, and coded using Atlas.ti v8 and thematic analysis. In total, 30 OHCPs participated. Most were registered nurses (70%), worked in outpatient setting (56.7%) and were in their current position 1-5 years (53.3%). Overarching themes are as follows: (a) cancer treatment disrupted due to patients' fear of exposure to COVID-19; (b) social distancing restrictions caused discontinued social support and supportive services that exacerbated psychological distress; (c) pandemic-related stressors led to overwhelmed coping skills; and (d) OHCPs played a vital role in providing emotional support and connecting patients with family/friends through technology. Behavioral health interventions should focus within the "new world of COVID-19" of reduced face-to-face support and increased online support for patients.

Impact of COVID-19 on Oncology Healthcare Providers: The Resilience of a Profession.

BACKGROUND: The novel coronavirus (COVID-19) has plagued countries worldwide. This pandemic has greatly affected healthcare delivery and those providing care to vulnerable, immunocompromised patients undergoing cancer treatment, who are at a higher risk for poorer outcomes related to COVID-19. OBJECTIVE: The aim of this study was to explore the impact of COVID-19 on oncology healthcare professionals (OHCPs). METHODS: An exploratory study design was employed using semistructured interviews. A thematic analysis was completed using Atlas.ti software. RESULTS: Of 30 OHCP participants, most were female (90%), registered nurses (70%), and bachelor's prepared (66%). The following themes emerged: (1) pandemic-related restrictions and stress on personal lives impacted the ability of OHCPs to rejuvenate and reenergize for work; (2) fear of exposure and transmission and concern for high-risk status for contracting COVID-19; (3) limited resources and inconsistent communication about organizational policies caused additional stress, affecting OHCP trust and confidence in the system; (4) concern for the mental health of fellow OCHPs; (5) adaptation and resilience were required amidst shifting workloads, workflow, and new restrictions; and (6) importance of self-care to reduce personal/professional stressors. CONCLUSIONS: Oncology healthcare professionals continue to face challenges of COVID-19 on their personal and professional lives yet have shown resilience during these unprecedented times. IMPLICATIONS FOR PRACTICE: Oncology healthcare professionals need to advocate for appropriate personal protective equipment and reliable mental health support services through employers. They should be engaged in COVID-19 task forces to ensure their challenges are heard and needs are addressed to provide quality oncology care.

The Use of Telehealth to Provide Continuity of Cancer Care during the COVID-19 Pandemic: Advantages, Disparities, and Implications to Promote Health Equity.

Perceptions of oncology health care providers use of telehealth to provide care to patients during the COVID-19 pandemic were explored. A qualitative study using semi-structured interviews and purposive sampling (N = 30) was conducted. Four themes emerged: 1) telehealth provided continuity of cancer care and used to decrease the risk of COVID-19 exposure; 2) advantages brought about convenience and inclusion of family caregivers; 3) telehealth revealed geographic, aging, and racial/ethnic disparities and digital illiteracy; and 4) rapid implementation was challenging. Telehealth provides a number of opportunities to support care for vulnerable cancer patients during this health crisis; however, disparities must be addressed.

Cancer statistics for the US Hispanic/Latino population, 2021.

The Hispanic/Latino population is the second largest racial/ethnic group in the continental United States and Hawaii, accounting for 18% (60.6 million) of the total population. An additional 3 million Hispanic Americans live in Puerto Rico. Every 3 years, the American Cancer Society reports on cancer occurrence, risk factors, and screening for Hispanic individuals in the United States using the most recent population-based data. An estimated 176,600 new cancer cases and 46,500 cancer deaths will occur among Hispanic individuals in the continental United States and Hawaii in 2021. Compared to non-Hispanic Whites (NHWs), Hispanic men and women had 25%-30% lower incidence (2014-2018) and mortality (2015-2019) rates for all cancers combined and lower rates for the most common cancers, although this gap is diminishing. For example, the colorectal cancer (CRC) incidence rate ratio for Hispanic compared with NHW individuals narrowed from 0.75 (95% CI, 0.73-0.78) in 1995 to 0.91 (95% CI, 0.89-0.93) in 2018, reflecting delayed declines in CRC rates among Hispanic individuals in part because of slower uptake of screening. In contrast, Hispanic individuals have higher rates of infection-related cancers, including approximately two-fold higher incidence of liver and stomach cancer. Cervical cancer incidence is 32% higher among Hispanic women in the continental US and Hawaii and 78% higher among women in Puerto Rico compared to NHW women, yet is largely preventable through screening. Less access to care may be similarly reflected in the low prevalence of localized-stage breast cancer among Hispanic women, 59% versus 67% among NHW women. Evidence-based strategies for decreasing the cancer burden among the Hispanic population include the use of culturally appropriate lay health advisors and patient navigators and targeted, community-based intervention programs to facilitate access to screening and promote healthy behaviors. In addition, the impact of the COVID-19 pandemic on cancer trends and disparities in the Hispanic population should be closely monitored.

Emergency preparedness during the COVID-19 pandemic: Perceptions of oncology professionals and implications for nursing management from a qualitative study.

AIM: To explore oncology health care professionals' perceptions of the COVID-19 pandemic response. BACKGROUND: The pandemic has created health care delivery challenges globally and many countries have exhibited low readiness and emergency preparedness. METHODS: A descriptive design using a qualitative approach was employed. Semi-structured interviews, which were completed via telephone, were audio recorded and transcribed verbatim. A thematic analysis was conducted. RESULTS: Participants (N = 30) were mostly registered nurses (70%). Three themes emerged: (1) ability to adapt and operationalize disaster planning, training and restructure nursing models (subtheme: reactive vs. proactive approach to emergency preparedness); (2) COVID-19 task forces and professional organisations were critical for valid information surrounding the pandemic; and (3) recommendations for emergency preparedness/planning for future pandemics. CONCLUSION: Oncology organisations adapted during the pandemic, but policies and procedures were perceived as reactive and not proactive. Recommendations for planning for future pandemics included (1) adequate personal protective equipment, (2) developing cancer-specific guidelines/algorithms and (3) telehealth training related to billing/reimbursement. Professional organisations were reliable resources of information during the pandemic, but oncology professionals ultimately trusted employers and administration to distribute information needed for safe patient care. IMPLICATIONS FOR NURSING MANAGEMENT: Frontline nurses should hold positions on task forces to develop future emergency preparedness.

A mixed-methods study of cyclin-dependent kinase 4 and 6 inhibitor symptom burden and quality of life among metastatic breast cancer patients and providers.

BACKGROUND: Cyclin-dependent kinase 4 and 6 (CDK4/6) inhibitor targeted therapies dramatically improve survival outcomes for metastatic breast cancer (MBC), but they are associated with significant symptom burden that can impact patients' health-related quality of life (HRQOL) and treatment outcomes. This study is the first to describe CDK4/6 inhibitor symptoms from the lived perspectives of MBC patients taking CDK4/6 inhibitors and healthcare providers involved in MBC care. This study also explored patients' symptom management and HRQOL concerns, and gathered feedback about developing supportive interventions for MBC. METHODS: MBC patients taking CDK4/6 inhibitors (N = 20) and MBC healthcare providers (N = 12) participated in semi-structured interviews that were analyzed for qualitative themes. MBC patients completed surveys about HRQOL, symptoms, and unmet needs. RESULTS: Patient and provider perceptions of CDK4/6 inhibitor symptoms did not align with patients perceiving symptoms as more burdensome. Patients reported that supportive resources (e.g., support groups, blogs) that are not specific to MBC do not adequately meet their needs. Patients and providers were enthusiastic about developing supportive interventions specifically for MBC and offered considerations for designing such interventions. CONCLUSIONS: Findings highlight differences in perceptions of CDK4/6 inhibitor symptom burden between MBC patients and providers. Results will inform the development of supportive interventions to assist MBC patients in managing CDK4/6 inhibitor symptom burden and maintaining HRQOL. Such interventions could also improve treatment outcomes.

Arguments in favor of and against the HPV vaccine school-entry requirement in Puerto Rico: a content analysis of newspaper media.

PURPOSE: Vaccine requirements are effective population-based strategies to increase vaccination rates. In 2018, Puerto Rico's DOH announced that the HPV vaccine would be required for school entrance. This study explored arguments in favor of and against the HPV vaccine school-entry requirement in PR. METHODS: We conducted a content analysis of two Puerto Rican newspapers. Articles (n = 286) published between 1/1/2015 and 7/31/2018 containing the Spanish terms for "HPV" and "human papillomavirus" were included. Data were summarized using descriptive statistics. Articles that mentioned the HPV vaccine school-entry requirement (n = 33) were reviewed qualitatively using applied thematic analysis. RESULTS: The top five primary focus areas were education about HPV and the HPV vaccine, advertisements promoting the HPV vaccine, general vaccine information, cervical cancer and screening information, and the HPV vaccine school-entry requirement. Of the 33 articles that mentioned the requirement, 61% presented arguments in favor, 15% presented arguments against, 12% presented both arguments, and 12% only mentioned the existence of the requirement or were the DOH announcement. Arguments in favor centered on cancer prevention, high rates of HPV-associated cancers, and population wellness. Arguments against included worries about sexual transmission of HPV, HPV vaccine's side effects, issues related to the policy (e.g., mandatory), and lack of education. CONCLUSION: Understanding reasons people support or oppose an HPV vaccine school-entry requirement is important for the policy processes to be successful. Education efforts must continue to change the HPV vaccine narrative. Messages should be crafted to educate and gain support among parents and stakeholders towards this population-based cancer prevention strategy.

The Intersection of Problems, Policy, and Politics: The Adoption of an HPV Vaccine School-Entry Requirement in Puerto Rico.

Persistent human papillomavirus (HPV) infections can cause cancer (e.g., cervical/vaginal/penile/anal/oropharyngeal). The HPV vaccine prevents cancer, yet U.S. vaccination rates remain low. We explored sociopolitical factors in the adoption of Puerto Rico's HPV vaccine school-entry requirement. Multiple streams framework explains how the intersection of problems, policy, and politics streams influence policy adoption. Policy entrepreneurs work on joining these streams. Interviews (n = 20) were conducted with stakeholders (e.g., physicians/researchers/nonprofit organizations' leaders). Data were analyzed using applied thematic analysis. High incidence of HPV and HPV-related cancers in Puerto Rico were indicators of problems. Focusing events included Rhaiza's case and the HPV-Advisory Panel Report. During summer 2017, a policy window opened; the Department of Health (DOH) adopted the requirement in summer 2018. Stakeholders discussed policy initiatives. Political turnover positively influenced the process. Policy entrepreneurs created an extended period of intersection resulting in the adoption of the requirement. Findings can inform policy initiatives to improve HPV vaccination rates and reduce HPV-related cancers.

Opportunities for and Perceptions of Integrating Community Health Workers Via the Affordable Care Act: Medicaid Health Homes.

CONTEXT: The Affordable Care Act created opportunities for innovative, cost-saving measures to improve health care access. Community health workers (CHWs) are frontline public health workers who have a close understanding of the communities they serve. States that expanded Medicaid coverage could also create Medicaid Health Homes (MHHs)-virtual health care networks-to coordinate care for people with chronic conditions. New York was the second state to implement MHHs and gave the option to include CHWs as part of the health care team. OBJECTIVE: To understand the perceptions of MHH administrators regarding CHW engagement in MHHs, as well as the facilitators and barriers to adoption in MHHs that are unknown. DESIGN, SETTING, AND PARTICIPANTS: Semistructured qualitative interviews (n = 18) were conducted with MHH administrators throughout New York State guided by the Diffusion of Innovations (DOI) framework. Qualitative thematic analysis was used to explore the domains and themes. RESULTS: Most MHH administrators believed that CHWs fit within MHHs. The DOI constructs of compatibility and complexity and the Consolidated Framework for Implementation Research construct of external policies helped explain CHW integration. CHWs were compatible with MHHs by enrolling patients, helping coordinate patient care, and providing social support. The complexities of CHW integration into MHHs included barriers to CHW integration, no direct reimbursement for their services, lack of clarity for CHW roles and responsibilities, and no explicit external policy for their use in MHHs. CONCLUSIONS: CHWs can, and have, been integrated into the relatively novel Health Home system. While some barriers have prevented their integration into all MHHs, lessons learned could provide guidance for CHW integration into other health care systems in the United States.

Impact of caregivers' negative response to cancer on long-term survivors' quality of life.

Cancer survivors' quality of life (QoL) is consistently shown to be positively impacted by social support from family and friends, including informal caregivers. In contrast, a loved one's negative response to cancer can diminish survivors' QoL, and these negative responses can be more impactful than supportive behaviors. Nonetheless, negative caregiver response has not been extensively researched, and few studies have explored the potential interaction of negative caregiver response and perceived social support on survivors' QoL. Therefore, we examined direct effects of perceived negative caregiver response, and the potential moderating role of social support, on QoL in a population-based sample of cancer survivors (N = 7543) using generalized linear models. Findings indicate that survivors who rated their caregiver's response to their cancer diagnosis more negatively reported worse physical and mental health, even up to 10 years after their initial cancer diagnosis. Perceived social support was not significantly associated with physical health, but it was positively associated with mental health. However, social support was not shown to moderate the relationship between negative caregiver response and mental health. Findings suggest that positive support from others within a survivor's social network may not be enough to attenuate the negative effects of their primary caregiver's unsupportive behaviors. Accordingly, cancer survivorship research and practice must consider the critical role that negative caregiver responses have on survivors' QoL and develop strategies that focus on the survivor-caregiver dynamic.

"Cancer is in style": lifestyle change and the perceived impact of globalization on Andean indigenous communities in Ecuador.

Introduction: There is a paucity of information on cancer among Indigenous populations in Latin America.Methods: Guided by tenets of community engaged research and syndemic theory, we conducted eight focus groups (n = 59) with Kichwa men and women in the province of Imbabura, Ecuador. Data were analyzed using applied thematic analysis techniques.Results: Cancer emerged as an important health problem and was reported as a growing concern. Kichwa participants in this study attributed the rise in cancer to (1) exposure to chemicals and pesticides, (2) urbanization and development, and (3) the rise of innutritious, westernized diets.Conclusion: Our findings suggest that the Kichwa are attuned to the global phenomena in which traditional diet has been replaced by western, processed foods and fast food, which result in higher levels of chronic diseases such as cancer. More research is needed to understand the cancer burden among Indigenous peoples in Latin America.

'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.

Cancer Statistics for Hispanics/Latinos, 2018.

Cancer is the leading cause of death among Hispanics/Latinos, who represent the largest racial/ethnic minority group in the United States, accounting for 17.8% (57.5 million) of the total population in the continental United States and Hawaii in 2016. In addition, more than 3 million Hispanic Americans live in the US territory of Puerto Rico. Every 3 years, the American Cancer Society reports on cancer occurrence, risk factors, and screening for Hispanics in the United States based on data from the National Cancer Institute, the North American Association of Central Cancer Registries, and the Centers for Disease Control and Prevention. For the first time, contemporary incidence and mortality rates for Puerto Rico, which has a 99% Hispanic population, are also presented. An estimated 149,100 new cancer cases and 42,700 cancer deaths will occur among Hispanics in the continental United States and Hawaii in 2018. For all cancers combined, Hispanics have 25% lower incidence and 30% lower mortality compared with non-Hispanic whites, although rates of infection-related cancers, such as liver, are up to twice as high in Hispanics. However, these aggregated data mask substantial heterogeneity within the Hispanic population because of variable cancer risk, as exemplified by the substantial differences in the cancer burden between island Puerto Ricans and other US Hispanics. For example, during 2011 to 2015, prostate cancer incidence rates in Puerto Rico (146.6 per 100,000) were 60% higher than those in other US Hispanics combined (91.6 per 100,000) and 44% higher than those in non-Hispanic whites (101.7 per 100,000). Prostate cancer is also the leading cause of cancer death among men in Puerto Rico, accounting for nearly 1 in 6 cancer deaths during 2011-2015, whereas lung cancer is the leading cause of cancer death among other US Hispanic men combined. Variations in cancer risk are driven by differences in exposure to cancer-causing infectious agents and behavioral risk factors as well as the prevalence of screening. Strategies for reducing cancer risk in Hispanic populations include targeted, culturally appropriate interventions for increasing the uptake of preventive services and reducing cancer risk factor prevalence, as well as additional funding for Puerto Rico-specific and subgroup-specific cancer research and surveillance.

Unpacking Hispanic Ethnicity-Cancer Mortality Differentials Among Hispanic Subgroups in the United States, 2004-2014.

Introduction: National data on the epidemiology of cancer are commonly reported by broad racial/ethnic categories, such as "Hispanic." However, few studies have disaggregated Hispanic groups and explored mortality differentials in this heterogeneous population. This paper aims to further examine cancer mortality differentials among Hispanic subgroups in the U.S. Materials and Methods: The study examined cancer deaths in the United States from 2004 to 2014 among decedents classified as Mexican, Puerto Rican, Cuban, Dominican, Central/South American and non-Hispanic white on the death certificate among those who were 20 years or older at the time of death. Data were obtained from the National Vital Statistics System. Sex-specific age-adjusted mortality rates were computed for a 10-year period and each individual year, for all cancers combined. Differences by age group, cancer sites, and age distribution were also assessed. Results: A total of 296,486 Hispanic cancer deaths were identified. Mortality rates of the Hispanic subgroups compare favorably with those of non-Hispanic whites. The mortality rates for Mexicans are very similar to those of all Hispanics combined, whereas the rates for Cuban and Puerto Ricans are higher. Dominicans and Central/South Americans had the overall lowest mortality rates. Statistically significant decreases in cancer mortality rates were noted in some sub-groups, but rates increased among Dominican women. Age-adjusted mortality rates by cancer site varied among Hispanics subgroups and gender. Among Cubans, only 5% of cancer deaths occurred before the age of 50 compared to 16% of cancer deaths among Central/South American. Conclusion: While it is common to present data on the burden of cancer among Hispanics as an aggregate group, this study illustrates that the burden of cancer varies by Hispanic subgroups. The disaggregation of Hispanics by ancestry/country of origin allows for a clearer understanding of the health status of this growing population and is needed if health disparities are to be adequately identified, understood and addressed.

Initial evaluation of the validity and reliability of the culturally adapted Spanish CaSUN (S-CaSUN).

PURPOSE: There is a dearth of knowledge and limited research on the needs of Hispanic male cancer survivors (HMCSs). There is a clear need for the development of culturally and linguistically adapted needs assessment tools that are valid and reliable for use among the growing HMCS population. Thus, the purpose of this paper is to describe the field testing and psychometric evaluation of the translated and culturally adapted Spanish Cancer Survivor Unmet Needs Measure (S-CaSUN). METHODS: Hispanic male cancer survivors (n = 84) completed the Spanish CaSUN (S-CaSUN), the Hospital Anxiety and Depression Scale (HADS), and the Functional Assessment of Cancer Therapy-General Population (FACT-GP). Construct validity of the S-CaSUN was assessed by correlation analysis among aforesaid measures. A test-retest procedure with 2-week delay was used to examine reproducibility with a participant subsample (n = 50). Cronbach's alpha was computed to assess internal consistency of the S-CaSUN. RESULTS: Construct validity of the S-CaSUN was estimated by moderate correlation with the HADS anxiety (r = 0.55, P < 0.001) and depression scales (r = 0.60, P < 0.001) and the FACT-GP (r = - 0.62, P < 0.001). The test-retest correlation coefficient for the S-CaSUN was 0.78. Cronbach's alpha was 0.96. Field testing yielded a mean S-CaSUN score of 38.3 (SD = 26.2); all needs and positive change items were endorsed. CONCLUSION: Findings from field testing and preliminary psychometric evaluation of the S-CaSUN provide initial evidence of validity and reliability of the measure and highlight the importance of going beyond translation when adapting measures to take culture, literacy, and language into consideration. IMPLICATIONS FOR CANCER SURVIVORS: Reliable, culturally, and linguistically valid instruments facilitate identification of unique unmet needs of Hispanic cancer survivors that, in turn, can be addressed with evidence-based interventions. As cancer centers continue to develop survivorship programs, the S-CaSUN may be useful for a growing group of cancer survivors.

Cultural adaptation of a supportive care needs measure for Hispanic men cancer survivors.

OBJECTIVE: Research with ethnic minority populations requires instrumentation that is cultural and linguistically relevant. The aim of this study was to translate and culturally adapt the Cancer Survivor Unmet Needs measure into Spanish. METHODS: We describe the iterative, community-engaged consensus-building approaches used to adapt the instrument for Hispanic male cancer survivors. We used an exploratory sequential mixed method study design. Methods included translation and back-translation, focus groups with cancer survivors (n = 18) and providers (n = 5), use of cognitive interview techniques to evaluate the comprehension and acceptability of the adapted instrument with survivors (n = 12), ongoing input from the project's community advisory board, and preliminary psychometric analysis (n = 84). RESULTS: The process emphasized conceptual, content, semantic, and technical equivalence. Combining qualitative and quantitative approaches offered a rigorous, systematic, and contextual approach to translation alone and supports the cultural adaptation of this measure in a purposeful and relevant manner. CONCLUSION: Our findings highlight the importance of going beyond translation when adapting measures for cross-cultural populations and illustrate the importance of taking culture, literacy, and language into consideration.