Future Fertility Among Pediatric Cancer Patients: Experiences and Perspectives of Health Workers in a Low-Resource Setting.

Purpose:Although fertility preservation for patients with childhood and adolescent cancer is considered standard of care in the high-resource settings, it is rarely offered in low-resource settings. This study explores the experiences and perspectives of oncology health care professionals in Uganda to identify contextual barriers and facilitators to addressing oncofertility in low-resource settings. Methods: Using ground theory, we conducted in-depth face-to-face interviews of health care professionals managing pediatric patients at the Uganda Cancer Institute (UCI). Using a systematic, semi-structured interview guide, participants were asked open-ended questions about their understanding of fertility preservation and their perspectives on implementing this care at their institution. Although all the eligible health care providers were interviewed, interview transcripts were uploaded into NVivo version 12 and openly coded as per theoretical requirements. Codes were refined into categories and later into structured themes. Results: Twelve health care professionals were interviewed. Most participants identified as female (n = 9). Their role in the medical team varied from nurses (n = 6), medical officers (n = 3), pediatric oncologists (n = 2), and pediatric oncology fellow (n = 1). Six themes were noted as follows: (1) importance of information, (2) importance of future fertility, (3) inadequate consideration to future fertility, (4) communication barriers, (5) inadequate knowledge, and (6) resource barriers. Conclusion: Although health care providers at the UCI face contextual barriers to addressing future fertility among patients with pediatric cancer, they value preserving fertility in this population. Future initiatives that aim to introduce oncofertility care in low-resource settings should prioritize educating providers and building capacity to meet the oncofertility needs in this setting.

Associations of geographic-based socioeconomic factors and HPV vaccination among male and female children in five US states.

BACKGROUND: We assessed whether five geographic-based socioeconomic factors (medically underserved area (MUA); healthcare provider shortage area (HPSA); persistent poverty; persistent child poverty; and social vulnerability index (SVI)) were associated with the odds of HPV vaccination initiation, series completion, and parental vaccine hesitancy, and whether the observed relationships varied by gender of the child. METHODS: An online panel service, administered through Qualtrics®, was used to recruit parents of adolescents 9-17 years of age to complete a one-time survey in 2021. Coverage of the panel included five US states: Arkansas, Mississippi, Missouri, Tennessee, and Southern Illinois. Generalized estimating equation (GEE) models were used to assess population-level associations between five geographic-based socioeconomic factors (MUA; HPSA; persistent poverty; persistent child poverty; and SVI) and three HPV vaccination outcomes (initiation, series completion, and hesitancy). All GEE models were adjusted for age of child and clustering at the state level. RESULTS: Analyses were conducted using responses from 926 parents about their oldest child in the target age range (9-17 years). The analytic sample consisted of 471 male children and 438 female children across the five states. In adjusted GEE models, persistent child poverty and HPSA were negatively associated with HPV vaccination initiation and series completion among female children, respectively. Among male children, high social vulnerability was negatively associated with HPV vaccine series completion. Additionally, persistent poverty and high social vulnerability were negatively associated with HPV vaccine hesitancy in male children. CONCLUSIONS: The results of this cross-sectional study suggest that geographic-based socioeconomic factors, particularly, HPSA, persistent poverty, and SVI, should be considered when implementing efforts to increase HPV vaccine coverage for adolescents. The approaches to targeting these geographic factors should also be evaluated in future studies to determine if they need to be tailored for male and female children.

Addressing Social Risks to Accelerate Health Equity in Cancer Prevention and Control.

Addressing social risks in cancer prevention and control presents a new opportunity for accelerating cancer health equity. As members of the American Society of Preventive Oncology (ASPO) Cancer Health Disparities Special Interest Group, we describe the current state of science on social risks in oncology research and practice. To reduce and eliminate the unjust burden of cancer, we also provide recommendations for multilevel research examining social risks as contributors to inequities and the development of social risks-focused interventions. Suggestions for research and practice are provided within levels of the socio-ecological model, including the interpersonal, organizational, community, and policy levels.

Integrating HPV self-collect into primary care to address cervical cancer screening disparities.

Human papillomavirus (HPV) self-collect shows promise to increase cervical cancer screening rates in underscreened populations, such as Somali patients, but little is known about how to integrate such an approach in primary care. In this study, primary care providers and staff who provide primary care services to Somali women were asked for their views on integrating HPV self-collect into routine care to address cervical cancer screening disparities. Thirty primary care providers and staff participated in semi-structured interviews exploring their views on HPV self-collect and their anticipated needs or barriers to implementing this approach into the clinic generally and with specific patient populations, such as Somali women. A thematic analysis using the constructivist version of grounded theory was undertaken. Providers and staff anticipate positive patient reaction to the option of HPV self-collect, and were interested in using this approach both for Somali patients and for all patients in general. HPV self-collect was viewed as straightforward to integrate into existing clinic workflows. Providers largely lacked awareness of the evidence supporting primary HPV testing and HPV self-collect specifically, sharing concerns about effectiveness of self-collect and the lack of a physical exam. Providers felt clinic-wide staff education and patient education, along with strategies to address disparities, such as cultural and linguistic tailoring would be needed for successful implementation. Integrating HPV self-collect as an option in the cervical cancer screening process in a primary care clinical encounter offers considerable opportunity to address health disparities and may benefit all patients.

Applications of implementation science frameworks, models and theories in disparities-focused cancer screening interventions: a scoping review protocol.

BACKGROUND: Implementation science (IS) frameworks, models and theories (FMTs) have gained popularity in guiding the implementation and evaluation of evidence-based interventions (EBIs) for cancer screening. However, there are significant research gaps in understanding their applications in cancer health disparities contexts. This paper outlines a scoping review protocol designed to explore the utilisation of IS FMTs in cancer screening EBIs to inform intervention designs and adaptations. METHODS AND ANALYSIS: This scoping review protocol adheres to Arksey and O'Malley's five-step methodological framework for conducting scoping studies. Search strategies were conducted in five bibliographic databases: Ovid MEDLINE, PubMed, Scopus, Web of Science and EMBASE. The search was run on 22 June 2023 with an English language filter and a date limit of 2001-current. Two reviewers will independently screen studies for inclusion and exclusion criteria. A third reviewer will be consulted, where appropriate at any of the review stages, to achieve consensus or resolve conflicts. Data will be collected, managed and analysed using Covidence. A narrative synthesis, based on Popay et al's methodology, will guide reporting and summarisation of results. The review will adhere to the PRISMA Extension for Scoping Reviews guidelines. ETHICS AND DISSEMINATION: This scoping review is a novel approach for examining a growing corpus of research literature on IS FMT applications used in cancer screening EBIs. As a secondary analysis, this scoping review does not require approval from an institutional review board. We anticipate the review will produce insightful information (eg, challenges, key areas for future directions) on the applications of IS TMFs in designing, deploying and testing EBIs for populations experiencing cancer screening disparities. We will disseminate the results through journals and conferences targeting IS and cancer prevention researchers and practitioners.

A Digital Diabetes Storytelling Intervention for the Hmong Community: A Pilot Study.

Hmong-Americans experience higher rates of diabetes and poorer diabetes-related health outcomes than their White peers. Traditional methods of diabetes education do not reach Hmong patients effectively due to known socioeconomic and literacy barriers. The purpose of this study is to examine the acceptability of a culturally informed diabetes self-management education video tool, using digital storytelling that was created using a community-engaged approach, administered in a single academic clinic that sees a large percentage of Hmong patients. The video tool was successful in the areas of acceptability, story transformation, and story identification; 96% of participants stated that the video felt like something from their community, 88% stated that they could identify with the story, 79% stated that they wanted to know what happened next, and 70% of participants reported that they were motivated to do something different after watching. New methods to improve diabetes education and improve health outcomes in Hmong communities are needed. Culturally informed digital storytelling is one tool, which may be used to improve diabetes health outcomes in this population.

Evaluating Human Papillomavirus eHealth in Hmong Adolescents to Promote Vaccinations: Pilot Feasibility Study.

BACKGROUND: Human papillomavirus (HPV) is a common sexually transmitted infection, causing multiple cancers, including cervical, penile, and anal. Infection and subsequent health risks caused by HPV can be diminished by HPV vaccination. Unfortunately, vaccination rates among Hmong Americans are substantially lower than those among other racial and ethnic groups, despite having higher cervical cancer rates than non-Hispanic White women. Such disparities and sparse literature highlight the need for innovative and culturally appropriate educational interventions to improve HPV vaccine rates in Hmong Americans. OBJECTIVE: We aimed to develop and evaluate the effectiveness and usability of an innovative web-based eHealth educational website, the Hmong Promoting Vaccines website (HmongHPV website), for Hmong-American parents and adolescents to improve their knowledge, self-efficacy, and decision-making capacities to obtain HPV vaccinations. METHODS: Through social cognitive theory and community-based participatory action research process, we created a theory-driven and culturally and linguistically appropriate website for Hmong parents and adolescents. We conducted a pre-post intervention pilot study to assess the website's effectiveness and usability. Overall, 30 Hmong-American parent and adolescent dyads responded to questions about HPV and HPV vaccine knowledge, self-efficacy, and decision-making at preintervention, 1 week after intervention, and at the 5-week follow-up. Participants responded to survey questions about website content and processes at 1 and 5 weeks, and a subset of 20 dyad participants participated in telephone interviews 6 weeks later. We used paired t tests (2-tailed) to measure the change in knowledge, self-efficacy, and decision-making processes, and used template analysis to identify a priori themes for website usability. RESULTS: Participants' HPV and HPV vaccine knowledge improved significantly from pre- to postintervention stage and follow-up. Knowledge scores increased from preintervention to 1 week after intervention for both parents (HPV knowledge, P=.01; vaccine knowledge, P=.01) and children (HPV knowledge, P=.01; vaccine knowledge, P<.001), which were sustained at the 5-week follow-up. Parents' average self-efficacy score increased from 21.6 at baseline to 23.9 (P=.007) at post intervention and 23.5 (P=.054) at follow-up. Similar improvements were observed in the teenagers' self-efficacy scores (from 30.3 at baseline to 35.6, P=.009, at post intervention and 35.9, P=.006, at follow-up). Collaborative decision-making between parents and adolescents improved immediately after using the website (P=.002) and at follow-up (P=.02). The interview data also revealed that the website's content was informative and engaging; in particular, participants enjoyed the web-based quizzes and vaccine reminders. CONCLUSIONS: This theory-driven, community-based participatory action research-designed and culturally and linguistically appropriate educational website was well received. It improved Hmong parents' and adolescents' knowledge, self-efficacy, and decision-making processes regarding HPV vaccination. Future studies should examine the website's impact on HPV vaccine uptake and its potential for broader use across various settings (eg, clinics and schools).

Exploring factors associated with preferences for human papillomavirus (HPV) self-sampling among racially- and ethnically-diverse women in Minnesota: A cross-sectional study.

Pap tests are still underutilized by minority women due to limited awareness of cervical cancer screening (CCS), inadequate health care access, and cultural or religious beliefs. Human papillomavirus (HPV) self-sampling, a new CCS tool, has demonstrated potential to overcome some of these barriers. In 2021, women aged 30-65 years old were recruited across Minnesota to complete an online survey. The survey assessed five outcome measures related to HPV self-sampling: (1) awareness of test; (2) self-efficacy to conduct test; (3) location preference of test (clinic vs. home); 4) collector preference (self vs. clinician); and (5) preference of CCS strategy (HPV self-sampling vs. Pap test). Modified Poisson regressions tested associations between sociodemographic variables and outcomes. A total of 420 women completed the survey, of which 32.4% identified as Non-Hispanic white, 22.2% as Hispanic, 12.6% as Black/African-American, 28.3% as Asian, 1.9% as American Indian/Alaskan Native, and 1.4% as more than two races. Few women had heard of HPV self-sampling (6.5%), but a majority reported high self-efficacy to perform self-sampling (75.3%). Women also reported higher preferences for completing an HPV test in the clinic (52.2%) and for performing a self-collected HPV test themselves (58.7%), yet would choose a traditional Pap test over HPV self-sampling (56.0%). The low level of HPV self-sampling awareness, across all racial/ethnic groups, suggests a strong opportunity to promote widespread educational efforts around this new tool. Future HPV self-sampling research efforts should examine educational interventions targeted at healthcare providers to educate and encourage women on the importance of self-collection options.

Understanding Reproductive Health among Survivors of Paediatric and Young adults (URHSPY) cancers in Uganda: A mixed method study protocol.

BACKGROUND: Although reproductive failure after cancer treatment in children and young adults has been extensively described in high-income countries, there is a paucity of data in low-income settings. In addition, patient, parent, or health worker experiences, perspectives, and attitudes toward the risk of reproductive failure among young cancer patients in these settings are unknown. This study will describe the extent of reproductive morbidity associated with cancer treatment among childhood and young adult cancer survivors in Uganda. In addition, we aim to explore the contextual enablers and barriers to addressing cancer treatment-related reproductive morbidity in Uganda. METHODS: This is an explanatory sequential mixed-method study. The quantitative phase will be a survey among childhood and young adult cancer survivors recruited from the Kampala Cancer Registry (KCR). The survey will utilize a Computer Assisted Telephone Interview (CATI) platform on a minimum of 362 survivors. The survey will obtain information on self-reported reproductive morbidity and access to oncofertility care. The qualitative phase will use grounded theory to explore contextual barriers and enablers to addressing reproductive morbidity associated with cancer treatment. The quantitative and qualitative phases will be integrated at the intermediate and results stage. CONCLUSION: Results from this study will inform the development of policy, guidelines, and programs supporting reproductive health among childhood and young adult cancer survivors.

Shared Decision-Making About Future Fertility in Childhood Cancer Survivorship: Perspectives of Parents in Uganda.

Background: Despite a plethora of literature on barriers to addressing future fertility in childhood cancer survivors, the data are not representative of limited middle-income settings. Unique and context-specific factors may influence addressing future fertility care among childhood cancer survivors in Uganda. This study aimed to explore the experiences, attitudes, and perceptions of parents on their interactions with health providers about future fertility, as part of their child's cancer survivorship. Methods: Using grounded theory, semistructured interviews were conducted with parents of children diagnosed with cancer, <18 years of age, and not in the induction or consolidation phases of treatment. Transcripts were thematically analyzed. Results: A total of 20 participants were interviewed, with the majority identifying as female (n = 18). The global theme that arose was the importance of shared decision-making, and the key themes encompassing this were as follows: (1) importance of accurate information, (2) respect of autonomy, and (3) engagement and psychosocial support. Conclusion: In Uganda, parents of children with cancer value a multifaceted approach to satisfactory decision-making within the context of oncofertility.

Understanding Fertility Attitudes and Outcomes Among Survivors of Adolescent and Young Adult Cancers in a Low-Resource Setting: A Registry-Based Computer-Assisted Telephone Interview Survey.

Purpose: To establish the extent of self-reported reproductive failure associated with cancer treatment, and attitudes toward fertility among adolescent and young adult (AYA) cancer survivors in Uganda. Methods: A registry-based computer-assisted telephone interview survey was conducted in Uganda. The survey population were survivors of childhood, adolescent and early adulthood cancers diagnosed between 2007 and 2018. The survey explored fertility outcomes, experiences of oncofertility and fertility attitudes of AYA cancer survivors. Results: Thirty-four (female = 14 and male = 20) interviews were completed. Survivors were 18-35 years of age. The median age at cancer diagnosis was 23.5 for females and 17.5 for males. Kaposi's sarcoma contributed to 44% of primary cancer diagnoses. All the survivors had received chemotherapy alone or in combination with other modalities and 79% of survivors had not received satisfactory information about future fertility before cancer treatment. Twenty one percent of males and 46% females met the criteria for infertility and 60% of these had met this criterion after their cancer diagnosis. Eighty two percent wanted to raise a biologically related child. Forty seven percent would be dissatisfied with their lives if they were unable to have a child or additional children. Conclusion: AYA cancer survivors in this low-resource setting reported reproductive failure, despite a strong fertility desire. Information and counseling provided on therapy-related problems before cancer treatment was insufficient and reinforces the need to build capacity for oncofertility resources within the region.

Health care personnel's perspectives on human papillomavirus (HPV) self-sampling for cervical cancer screening: a pre-implementation, qualitative study.

BACKGROUND: Persistent infection with high-risk human papillomavirus (hrHPV) types is a well-documented cause of cervical cancer. Since the implementation of cervical cancer screening methods (e.g., Pap tests), cervical cancer rates have declined. However, Pap tests are still unacceptable to many women and require complex infrastructure and training. Self-sampling techniques for collecting HPV specimens (or "HPV self-sampling") have been proposed as a possible alternative to overcome these barriers. The objective of this study was to capture perspectives from health care personnel (providers, leaders, and clinic staff) across primary care systems on the potential implementation of an HPV self-sampling practice. METHODS: Between May and July 2021, a study invitation was emailed to various health care professional networks across the Midwest, including a snowball sampling of these networks. Eligible participants were invited to a 45-60-min Zoom-recorded interview session and asked to complete a pre-interview survey. The survey collected sociodemographics on age, occupation, level of educational attainment, race/ethnicity, gender, and awareness of HPV self-sampling. The semi-structured interview was guided by the Consolidated Framework for Implementation Research and asked participants about their views on HPV self-sampling and its potential implementation. All interviews were audio-recorded, transcribed, and analyzed using NVivo 12. RESULTS: Key informant interviews were conducted with thirty health care personnel-13 health care providers, 6 clinic staff, and 11 health care leaders-from various health care systems. Most participants had not heard of HPV self-sampling but reported a general enthusiasm for wanting to implement it as an alternative cervical cancer screening tool. Possible barriers to implementation were knowledge of clinical evidence and ease of integration into existing clinic workflows. Potential facilitators included the previous adoption of similar self-sampling tools (e.g., stool-based testing kits) and key decision-makers. CONCLUSION: Although support for HPV self-sampling is growing, its intervention's characteristics (e.g., advantages, adaptability) and the evidence of its clinical efficacy and feasibility need to be better disseminated across US primary care settings and its potential adopters. Future research is also needed to support the integration of HPV self-sampling within various delivery modalities (mail-based vs. clinic-based).

The implementation of a smoking cessation and alcohol abstinence intervention for people experiencing homelessness.

BACKGROUND: In the United States, eighty percent of the adult homeless population smokes cigarettes compared to 15 percent of the general population. In 2017 Power to Quit 2 (PTQ2), a randomized clinical trial, was implemented in two urban homeless shelters in the Upper Midwest to address concurrent smoking cessation and alcohol treatment among people experiencing homelessness. A subset of this study population were interviewed to assess their experiences of study intervention. The objective of this study was to use participants' experiences with the intervention to inform future implementation efforts of combined smoking cessation and alcohol abstinence interventions, guided by the Consolidated Framework for Implementation Research (CFIR). METHODS: Qualitative semi-structured interviews were conducted with 40 PTQ2 participants between 2016-2017 and analyzed in 2019. Interviews were audio-recorded, transcribed, and analyzed using a socially constructivist approach to grounded theory. RESULTS: Participants described the PTQ2 intervention in positive terms. Participants valued the opportunity to obtain both counseling and nicotine-replacement therapy products (intervention characteristics) and described forming a bond with the PTQ2 staff and reliance on them for emotional support and encouragement (characteristics of individuals). However, the culture of alcohol use and cigarette smoking around the shelter environment presented a serious challenge (outer setting). The study setting and the multiple competing needs of participants were reported as the most challenging barriers to implementation (implementation process). CONCLUSION: There are unique challenges in addressing smoking cessation with people experiencing homelessness. For those in shelters there can be the difficulty of pro-smoking norms in and around the shelter itself. Considering pairing cessation with policy level interventions targeting smoke-free spaces, or pairing cessation with housing support efforts may be worthwhile.. Participants described a discord in their personal goals of reduction compared with the study goals of complete abstinence, which may pose a challenge to the ways in which success is defined for people experiencing homelessness. TRIAL REGISTRATION: Clinicaltrials.gov, NCT01932996 , registered 08/30/2013.

Nativity Differences in Awareness and Knowledge About HPV Infection and Vaccination Among U.S. Adults: Findings from a National Population-Based Sample.

Foreign-born populations in the United States suffer multiple disparities related to human papillomavirus, including higher cervical cancer mortality and lower HPV vaccination. No nationally based studies have examined the relationship between nativity with HPV and HPV vaccination awareness and knowledge, especially examining acculturation, an immigration-specific process affecting health-related behaviors. We assessed nativity differences in HPV awareness and knowledge, and awareness of HPV vaccination using data from a population-based sample of adults in the U.S. (n = 2415). Among foreign-born respondents, we also assessed the association of acculturation with outcomes. Awareness of HPV and HPV vaccination were lower among foreign-born respondents compared to U.S.-born respondents. Knowledge of HPV was similar between populations. Acculturation was not associated with any of the assessed outcomes. Findings suggest HPV-related awareness deficits among foreign-born U.S. residents, highlighting a need for culturally-appropriate HPV prevention efforts.

"We will do whatever it takes": Understanding Socioecological Level Influences on Hmong-American Adolescents and Parents' Perceptions of the Human Papillomavirus Vaccine.

Human papillomavirus (HPV) vaccination completion rates in Asian-American populations are substantially lower than most White Americans. Our objective was to identify the knowledge, perceptions, and decision-making processes about HPV vaccinations in the Hmong population, an Asian-American group with increased risks of HPV-related cancers. We conducted eight focus groups with Hmong adolescents (n = 12) and parents (n = 13) to learn about barriers, facilitators, and decision-making processes regarding general vaccinations and the HPV vaccine. The focus group results were analyzed using thematic analysis, informed by the socioecological model and asset lens. Findings showed that at the individual level, Hmong adolescents and parents had low HPV and HPV vaccine awareness levels (barrier) and strong desires to learn about HPV and the HPV vaccine (facilitator). Community-level barriers included salient narratives about traumatic experiences with vaccines and vaccine research, while facilitators included strong community connections. At the institutional level, barriers included structural constraints in health care settings, while facilitators included ease of obtaining vaccines at school-based clinics and provider authoritative decision-making. Additionally, a range of decision-making processes between parents, adolescents, and providers were present, with parents expressing a strong appeal to engage in more shared decision-making with providers. A linguistically and culturally specific HPV educational program for Hmong adolescents and parents could address the barriers and build on facilitators and assets to promote HPV vaccine uptake in this growing Asian-American community.

Beyond Diversity: Focusing on and Enhancing Inclusion in the Society for Epidemiologic Research.

Increasing diversity and inclusion among organizational membership has become a focus for many professional societies, including the Society for Epidemiologic Research (SER). In this issue of the Journal, DeVilbiss et al. (Am J Epidemiol. 2020:189(10):998-1010) assessed dimensions of diversity and inclusion within SER to provide baseline data for future evaluations of Society initiatives. In our response, we note that diversity in SER appears strong but there is lag with regard to inclusion. We also highlight some of the major weaknesses of this study that hinder efforts to accurately evaluate inclusion within SER. There is a need to more concretely define inclusion and think broadly about how measures of inclusion should be operationalized in future surveys. Additional limitations of the study include its limited generalizability to the wider SER membership and the lack of questions about barriers to inclusion in SER activities. We conclude with recommendations for SER and other professional societies based on prior literature evaluating successful diversity and inclusion efforts. We also propose a conceptual model to assist with operationalizing and directing future analyses of inclusion measures. It is essential that SER move beyond efforts around diversity to focus on measuring and enhancing inclusion.

Matching study areas using Google Street View: A new application for an emerging technology.

Google Street View (GSV) can be used as an effective tool to conduct virtual neighborhood audits. We expand on this research by exploring the utility of a GSV-based neighborhood audit to measure and match target and comparison study areas. We developed a GSV-based inventory to measure characteristics of retail alcohol stores and their surrounding neighborhoods. We assessed its reliability and assessed the utility of GSV-based audits for matching target and comparison study areas. We found that GSV-based neighborhood audits can be a useful, reliable, and cost-effective tool for matching target and comparison study areas when archival data are insufficient and primary data collection is prohibitive. We suggest that researchers focus on characteristics that are easily visible on GSV and are relatively stable over time when creating future GSV-based measuring and matching tools. Dividing the study area into small segments may also provide more accurate measurements and more precise matching.