A framework and process for community-engaged, mixed-methods cancer needs assessments.

PURPOSE: Community health needs assessments are required for most state and local public health agencies and non-profit hospitals. Typically based on community health improvement planning models, these assessments encompass overall community health and multiple diseases to inform program planning. National Cancer Institute (NCI)-designated Cancer Centers and community-based cancer-focused programs share the goal of reducing cancer burden in the catchment areas they serve. However, to date, no published models exist to guide cancer-specific needs assessments for a determined geographic area that can inform both public health and research initiatives. The purpose of this article is to outline a cancer needs assessment (CNA) framework and community-engaged, mixed-methods process, along with a case study of how we applied it in Kentucky. METHODS: We convened a steering committee of key organizational partners to provide input throughout the process. We developed a conceptual framework of multi-level determinants affecting cancer-related outcomes. We incorporated both quantitative and qualitative data gathered through a variety of means, including a novel application of group concept mapping to guide definition of priorities. RESULTS: The resulting CNA has helped guide strategic planning and priorities for Kentucky's Cancer Action Plan, Markey Cancer Center, state agencies, and community-based organizations. CONCLUSION: This framework and process can be used collaboratively by cancer center Community Outreach and Engagement offices, public health agencies, oncology programs, and community partners to plan impactful cancer control programs and research in their catchment areas. Universities can also use them to inform the planning of community engagement and health equity research efforts.

Measurement of provider fidelity to immunization guidelines: a mixed-methods study on the feasibility of documenting patient refusals of the human papillomavirus vaccine.

BACKGROUND: Assessment and feedback is a common implementation strategy to improve healthcare provider fidelity to clinical guidelines. For immunization guidelines, fidelity is often measured with doses administered during eligible visits. Adding a patient refusal measure captures provider fidelity more completely (i.e., all instances of a provider recommending a vaccine, resulting in vaccination or refusal) and enables providers to track patient vaccine hesitancy patterns. However, many electronic health record (EHR) systems have no structured field to document multiple instances of refusals for specific vaccines, and existing billing codes for refusal are not vaccine specific. This study assessed the feasibility of a novel method for refusal documentation used in a study focused on human papillomavirus (HPV) vaccine. METHODS: An observational, descriptive-comparative, mixed-methods study design was used to conduct secondary data analysis from an implementation-effectiveness trial. The parent trial compared coach-based versus web-based practice facilitation, including assessment and feedback, to increase HPV vaccination in 21 community-based private pediatric practices. Providers were instructed to document initial HPV vaccine refusals in the EHR's immunization forms and subsequent refusals using dummy procedure codes, for use in assessment and feedback reports. This analysis examined adoption and maintenance of the refusal documentation method during eligible well visits, identified barriers and facilitators to documentation and described demographic patterns in patient refusals. RESULTS: Seven practices adopted the refusal documentation method. Among adopter practices, documented refusals started at 2.4% of eligible well visits at baseline, increased to 14.2% at the start of implementation, peaked at 24.0%, then declined to 18.8%. Barriers to refusal documentation included low prioritization, workflow integration and complication of the billing process. Facilitators included high motivation, documentation instructions and coach support. Among adopter practices, odds of refusing HPV vaccine were 25% higher for patients aged 15-17 years versus 11-12 years, and 18% lower for males versus females. CONCLUSIONS: We demonstrated the value of patient refusal documentation for measuring HPV vaccination guideline fidelity and ways that it can be improved in future research. Creation of vaccine-specific refusal billing codes or EHR adaptations to enable documenting multiple instances of specific vaccine refusals would facilitate consistent refusal documentation. Trial Registration NCT03399396 Registered in ClinicalTrials.gov on 1/16/2018.

[Efforts towards the consolidation of public policies for the prevention of HPV-associated cancers in Puerto RicoEsforços realizados em Porto Rico para a consolidação de políticas públicas de prevenção de cânceres associados ao HPV]. / Esfuerzos realizados en Puerto Rico hacia la consolidación de políticas públicas para la prevención de cánceres asociados al VPH.

The purpose of this special report is to describe chronologically the events that contributed to the development and approval of legislation and subsequent implementation of a school vaccination mandate in order to prevent HPV and HPV-associated cancers in Puerto Rico (PR). Starting in 2010, PR initiated public-policy approvals aimed at improving cancer registries and HPV vaccine coverage through health insurance for adolescents aged 11 to 18 years. In 2014, scientific and community efforts succeeded in documenting the magnitude of morbidity caused by HPV and jointly developing HPV vaccine prevention and promotion strategies. In August 2018, PR became one of the first four territories of the United States of America to implement the HPV vaccine school entry requirement to decrease the incidence of HPV-associated cancers on the island. In 2019, it was enshrined in law that every immunization provider must submit immunization data to the Puerto Rico Immunization Registry. The case of PR demonstrates that public policy-making alongside collaboration between academic, scientific, and community coalitions can achieve population change and measurable outcomes aimed at HPV prevention. Countries with a similar public health problem could adopt efforts similar to those presented herein and align them with the World Health Organization goal of eradicating cervical cancer by 2030.

O propósito deste relatório especial é descrever cronologicamente os eventos que contribuíram para o desenvolvimento e a aprovação de legislação, e a implementação da exigência escolar de vacinação em Porto Rico (PR), a fim de prevenir o HPV e os cânceres associados a ele. A partir de 2010, PR iniciou as aprovações de políticas públicas com o objetivo de aprimorar o registro dos casos de câncer e a cobertura vacinal contra o HPV, por meio de planos de saúde, em adolescentes de 11 a 18 anos. Em 2014, esforços científicos e comunitários permitiram documentar a magnitude das doenças causadas pelo HPV e elaborar conjuntamente estratégias de prevenção e promoção da vacina contra o HPV. Em agosto de 2018, PR foi um dos primeiros quatro territórios dos Estados Unidos da América a implementar a vacina contra o HPV como exigência escolar, a fim de diminuir a incidência de cânceres associados ao HPV na ilha. Em 2019 ficou garantido por lei que todos os vacinadores devem enviar informações ao Registro de Imunização. O caso de PR demonstra que o desenvolvimento de políticas públicas, em conjunto com parcerias entre coalizões acadêmicas, científicas e comunitárias, alcança mudanças populacionais e resultados mensuráveis dirigidos à prevenção do HPV. Países com uma problemática de saúde pública similar poderiam adotar esforços semelhantes aos apresentados e alinhá-los ao objetivo da Organização Mundial da Saúde: a erradicação do câncer cervical até 2030.

A pilot study of a culturally-appropriate, educational intervention to increase participation in cancer clinical trials among African Americans and Latinos.

AIM: Culturally-appropriate, educational programs are recommended to improve cancer clinical trial participation among African Americans and Latinos. This study investigated the effect of a culturally-appropriate, educational program on knowledge, trust in medical researchers, and intent for clinical trial participation among African Americans and Latinos in Middle Tennessee. METHOD: Trained community health educators delivered a 30-min presentation with video testimonials to 198 participants in 13 town halls. A pre-post survey design was used to evaluate the intervention among 102 participants who completed both pre- and post-surveys one to two weeks after the session. RESULTS: Paired-sample t-test showed significant increases in unadjusted mean scores for knowledge (p < 0.001), trust in medical researchers (p < 0.001), and willingness to participate in clinical trials (p = 0.003) after the town halls in the overall sample. After adjusting for gender and education, all three outcomes remained significant for the overall sample (knowledge: p < 0.001; trust in medical researchers: p < 0.001; willingness: p = 0.001) and for African Americans (knowledge: p < 0.001; trust in medical researchers: p = 0.007; willingness: p = 0.005). However, willingness to participate was no longer significant for Latinos (knowledge: p < 0.001; trust in medical researchers: p = 0.034; willingness: p = 0.084). CONCLUSIONS: The culturally-appropriate, educational program showed promising results for short-term, clinical trial outcomes. Further studies should examine efficacy to improve research participation outcomes.

Enhancing Cancer care of rural dwellers through telehealth and engagement (ENCORE): protocol to evaluate effectiveness of a multi-level telehealth-based intervention to improve rural cancer care delivery.

BACKGROUND: Despite lower cancer incidence rates, cancer mortality is higher among rural compared to urban dwellers. Patient, provider, and institutional level factors contribute to these disparities. The overarching objective of this study is to leverage the multidisciplinary, multispecialty oncology team from an academic cancer center in order to provide comprehensive cancer care at both the patient and provider levels in rural healthcare centers. Our specific aims are to: 1) evaluate the clinical effectiveness of a multi-level telehealth-based intervention consisting of provider access to molecular tumor board expertise along with patient access to a supportive care intervention to improve cancer care delivery; and 2) identify the facilitators and barriers to future larger scale dissemination and implementation of the multi-level intervention. METHODS: Coordinated by a National Cancer Institute-designated comprehensive cancer center, this study will include providers and patients across several clinics in two large healthcare systems serving rural communities. Using a telehealth-based molecular tumor board, sequencing results are reviewed, predictive and prognostic markers are discussed, and treatment plans are formulated between expert oncologists and rural providers. Simultaneously, the rural patients will be randomized to receive an evidence-based 6-week self-management supportive care program, Cancer Thriving and Surviving, versus an education attention control. Primary outcomes will be provider uptake of the molecular tumor board recommendation and patient treatment adherence. A mixed methods approach guided by the Consolidated Framework for Implementation Research that combines qualitative key informant interviews and quantitative surveys will be collected from both the patient and provider in order to identify facilitators and barriers to implementing the multi-level intervention. DISCUSSION: The proposed study will leverage information technology-enabled, team-based care delivery models in order to deliver comprehensive, coordinated, and high-quality cancer care to rural and/or underserved populations. Simultaneous attention to institutional, provider, and patient level barriers to quality care will afford the opportunity for us to broadly share oncology expertise and develop dissemination and implementation strategies that will enhance the cancer care delivered to patients residing within underserved rural communities. TRIAL REGISTRATION: Clinicaltrials.gov , NCT04758338 . Registered 17 February 2021 - Retrospectively registered, http://www.clinicaltrials.gov/.

Understanding parents' views toward the newly enacted HPV vaccine school entry policy in Puerto Rico: a qualitative study.

BACKGROUND: The Human papillomavirus vaccine (HPV) is an essential tool for the prevention of HPV-related cancers. In Puerto Rico, the Secretary of Health established a school entry requirement of at least one dose of HPV vaccination in girls and boys aged 11 and 12 years, taking effect in August 2018. Our study aimed to examine parents' and guardians' views of unvaccinated children about the process of implementation of the new HPV vaccination school entry policy in Puerto Rico and identify potential barriers and facilitators related to the implementation of this requirement. METHODS: During April through November 2019, we conducted three focus groups (n = 12) and eight in-depth semi-structured interviews with parents of children aged 11 and 12 who had not yet initiated the HPV vaccine series. The interview topics addressed were: perception of vaccination, HPV vaccine and it is inclusion as new school entry requirement practice, procedure of the sources of information, influencers, and willingness to change. The interviews were recorded and transcribed by our staff members. We identified emergent themes through thematic analysis. RESULTS: The participants' perspective on the HPV vaccine school requirement was mixed. Lack of information of the HPV vaccines and lack of communication about the school-entry requirement were the themes most mentioned in the interviews. Moreover, previous negative experiences from friends or family members and adverse effects deterred some participants from vaccinating their kids. We discussed barriers in the process of soliciting an exemption. CONCLUSION: Most barriers mentioned by study participants are modifiable. Information about the HPV vaccine mandate's implementation and educational materials regarding HPV vaccine safety need to be provided to address parents' concerns related to the vaccine's side effects. Schools (teachers, principal directors, and administrative staff), the government, and parent organizations need to be part of these efforts. This multilevel approach will help to improve disseminating information about HPV vaccination to clarify doubts and misinformation among parents.

Content analysis of digital media coverage of the human papillomavirus vaccine school-entry requirement policy in Puerto Rico.

BACKGROUND: In August 2018, Puerto Rico (PR) became the 4th state or territory in the United States to adopt a human papillomavirus (HPV) vaccine school-entry requirement, for students 11-12 years old. Evidence suggests that the content of media coverage may impact people's perception of HPV vaccine and their willingness to vaccinate. This study aimed to analyze the content of digital news coverage related to the implementation of the policy in PR. METHODS: A content review was conducted of digital media published from January 2017 through December 2018. The content reviewed was carried out in two steps: 1) creating a matrix to summarize each article's content about the policy and 2) qualitative analysis using a grounded theory approach. RESULTS: The search resulted in 34 articles obtained from 17 online local and international news outlets that reported the policy's implementation. Analyses showed that 61% of the news articles did not mention the number of required doses, and 79% discussed the new policy concerning cancer prevention. In 2017, news coverage focused mostly on describing the policy, while 2018 coverage focused on controversies surrounding the implementation. Neutral emergent codes included: 1) Description of the policy; 2) Information about HPV related cancers; and 3) General information about HPV vaccine. Negative emergent codes included: 1) infringement to patient and parental autonomy; 2) Hesitancy from the political sector, and 3) Hesitancy from groups and coalitions. Positive content included: 1) knowledge and acceptance of HPV vaccine for cancer prevention; 2) importance of education and protective sexual behaviors; and 3) new vaccination law proposal. CONCLUSIONS: Most of the media coverage in PR was neutral and included limited information related to the vaccine, HPV, and HPV-related cancers. Neutral and negative themes could influence public concerns regarding the new policy, as well as HPV vaccination rates in PR.

Formative research to design a culturally-appropriate cancer clinical trial education program to increase participation of African American and Latino communities.

BACKGROUND: Addressing knowledge deficiencies about cancer clinical trials and biospecimen donation can potentially improve participation among racial and ethnic minorities. This paper describes the formative research process used to design a culturally-appropriate cancer clinical trials education program for African American and Latino communities. We characterized community member feedback and its integration into the program. METHODS: We incorporated three engagement approaches into the formative research process to iteratively develop the program: including community-based organization (CBO) leaders as research team members, conducting focus groups and cognitive interviews with community members as reviewers/consultants, and interacting with two community advisory groups. An iterative-deductive approach was used to analyze focus group data. Qualitative data from advisory groups and community members were compiled and used to finalize the program. RESULTS: Focus group themes were: 1) Community Perspectives on Overall Presentation; 2) Community Opinions and Questions on the Content of the Presentation; 3) Culturally Specific Issues to Participation in Cancer Clinical Trials; 4) Barriers to Clinical Trial Participation; and 5) Perspectives of Community Health Educators. Feedback was documented during reviews by scientific experts and community members with suggestions to ensure cultural appropriateness using peripheral, evidential, linguistic, sociocultural strategies, and constituent-involving. The final program consisted of two versions (English and Spanish) of a culturally-appropriate slide presentation with speaker notes and videos representing community member and researcher testimonials. CONCLUSIONS: Incorporating multiple community engagement approaches into formative research processes can facilitate the inclusion of multiple community perspectives and enhance the cultural-appropriateness of the programs designed to promote cancer clinical trial participation among African Americans and Latinos.

Pragmatic trial of an intervention to increase human papillomavirus vaccination in safety-net clinics.

BACKGROUND: Human papillomavirus (HPV) infection has been causally linked to six cancers, and many disproportionately affect minorties. This study reports on the development and effectiveness of an intervention aimed at increasing HPV vaccine uptake among African American and Hispanic pediatric patients in safety-net clinics. METHODS: Formative research, community engagement, and theory guided development of the intervention. A clustered, non-randomized controlled pragmatic trial was conducted in four clinics providing healthcare for the underserved in Tennessee, U.S., with two intervention sites and two usual care sites. Patients aged 9-18 years (N = 408) and their mothers (N = 305) enrolled, with children clustered within families. The intervention consisted of two provider/staff training sessions and provision of patient education materials, consisting of a video/flyer promoting HPV vaccine. Medical records were reviewed before/after the initial visit and after 12 months. RESULTS: At the initial visit, provision of patient education materials and provider recommendation were higher at intervention sites versus usual care sites, and receipt of HPV vaccine was higher at intervention sites (45.4% versus 32.9%) but not significantly after adjusting for patient's age and mother's education. Provider recommendation, but not education materials, increased the likelihood of vaccine receipt at the initial visit, although over one-third of intervention mothers cited the flyer/video as motivating vaccination. Completion of the 3-dose series at follow-up was lower in the intervention arm. CONCLUSIONS: Future interventions should combine patient education, intensive provider/staff education, and patient reminders. Research should compare patient education focusing on HPV vaccine only versus all adolescent vaccines. TRIAL REGISTRATION: Retrospectively registered with ClinicalTrials.gov NCT02808832 , 9/12/16.

Adolescent Participation in HPV Vaccine Clinical Trials: Are Parents Willing?

Approximately one-quarter of human papillomavirus (HPV) infections are acquired by adolescents, with a higher burden among racial/ethnic minorities. However, racial/ethnic minorities have been underrepresented in previous HPV vaccine trials. Ongoing and future HPV vaccine optimization trials would benefit from racially- and ethnically-diverse sample of adolescent trial participants. This study examined factors influencing parental willingness to consent to their adolescents' participation in HPV vaccine clinical trials and tested for possible racial differences. A convenience sample of parents of adolescents (N = 256) completed a cross-sectional survey. Chi square analyses were used to assess racial differences in parental HPV vaccine awareness and intentions and willingness to consent to their child participating in an HPV vaccine clinical trial. Ordinal logistic regression was used to identify factors associated with willingness. Approximately 47% of parents were willing to allow their adolescent to participate in HPV vaccine clinical trials (30.7% African American and 48.3% Caucasian, p = .081). African Americans had lower HPV vaccine awareness (p = .006) but not lower intentions to vaccinate (p = .086). Parental willingness was positively associated with the following variables: Child's age (p < .039), Perceived Advantages of HPV Vaccination for Adolescents (p = .002), Parental Trust in Medical Researchers (p < .001), and Level of Ease in Understanding Clinical Trial Information (p = .010). Educating parents about the advantages of HPV vaccines for younger adolescents using low-literacy educational materials and building trust between parents and researchers may increase parental willingness to consent to adolescent participation in HPV vaccine clinical trials.

Availability of Low-Fat Milk and Produce in Small and Mid-Sized Grocery Stores After 2014 WIC Final Rule Changes, Tennessee.

INTRODUCTION: The 2007 Interim Rule mandated changes to food packages in the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) for implementation by 2009. The 2014 Final Rule required additional changes, including increasing the cash value voucher for fruits and vegetables from $6 to $8 for children by June 2014, and allowing only low-fat (1%) or nonfat milk for mothers and children aged 2 to 4 years by October 2014. This study evaluated the effect of the 2014 Final Rule changes on the food environment of small and mid-sized WIC-authorized grocery stores. METHODS: We analyzed secondary data using a natural experimental design to compare the percentage of shelf space for low-fat and nonfat milk and the number of fresh fruit and vegetable varieties in stock before and after the changes. We collected observational data on 18 small and mid-sized WIC-authorized grocery stores in Nashville, Tennessee, using the Nutrition Environment Measures in Store tool in March 2014 and February 2016. RESULTS: The mean percentage of shelf space occupied by low-fat and nonfat milk increased from 2.5% to 14.4% (P = .003), primarily because of an increase in the proportion of low-fat milk (P = .001). The mean number of fresh fruit and vegetable varieties increased from 24.3 to 27.7 (P = .01), with a significant increase for vegetables (P = .008) but not fruit. CONCLUSION: Availability of low-fat milk and variety of fresh vegetables increased after the Final Rule changes in the observed stores. Future research should examine outcomes in other cities.

Using an Implementation Research Framework to Identify Potential Facilitators and Barriers of an Intervention to Increase HPV Vaccine Uptake.

BACKGROUND: Although the incidence of cervical cancer has been decreasing in the United States over the last decade, Hispanic and African American women have substantially higher rates than Caucasian women. The human papillomavirus (HPV) is a necessary, although insufficient, cause of cervical cancer. In the United States in 2013, only 37.6% of girls 13 to 17 years of age received the recommended 3 doses of a vaccine that is almost 100% efficacious for preventing infection with viruses that are responsible for 70% of cervical cancers. Implementation research has been underutilized in interventions for increasing vaccine uptake. The Consolidated Framework for Implementation Research (CFIR), an approach for designing effective implementation strategies, integrates 5 domains that may include barriers and facilitators of HPV vaccination. These include the innovative practice (Intervention), communities where youth and parents live (Outer Setting), agencies offering vaccination (Inner Setting), health care staff (Providers), and planned execution and evaluation of intervention delivery (Implementation Process). METHODS: Secondary qualitative analysis of transcripts of interviews with 30 community health care providers was conducted using the CFIR to code potential barriers and facilitators of HPV vaccination implementation. RESULTS: All CFIR domains except Implementation Process were well represented in providers' statements about challenges and supports for HPV vaccination. CONCLUSION: A comprehensive implementation framework for promoting HPV vaccination may increase vaccination rates in ethnically diverse communities. This study suggests that the CFIR can be used to guide clinicians in planning implementation of new approaches to increasing HPV vaccine uptake in their settings. Further research is needed to determine whether identifying implementation barriers and facilitators in all 5 CFIR domains as part of developing an intervention contributes to improved HPV vaccination rates.

Use of Six Sigma for eliminating missed opportunities for prevention services.

Delivery of primary care preventative services can be significantly increased utilizing Six Sigma methods. Missed preventative service opportunities were compared in the study clinic with the community clinic in the same practice. The study clinic had 100% preventative services, compared with only 16.3% in the community clinic. Preventative services can be enhanced to Six Sigma quality when the nurse executive and medical staff agree on a single standard of nursing care executed via standing orders.

HPV vaccine use among African American girls: qualitative formative research using a participatory social marketing approach.

OBJECTIVE: To generate recommendations for framing messages to promote HPV vaccination, specifically for African American adolescents and their parents who have not yet made a decision about the vaccine (the "Undecided" market segment). METHODS: Focus groups and interviews were conducted with African American girls ages 11-18 (N=34) and their mothers (N=31), broken into market segments based on daughter's vaccination status and mother's intent to vaccinate. RESULTS: Findings suggested that the HPV vaccine should be presented to "Undecided" mothers and adolescents as a routine vaccine (just like other vaccines) that helps prevent cancer. Within the "Undecided" segment, we identified two sub-segments based on barriers to HPV vaccination and degree of reluctance. The "Undecided/Ready If Offered" segment would easily accept HPV vaccine if given the opportunity, with basic information and a healthcare provider recommendation. The "Undecided/Skeptical" segment would need more in-depth information to allay concerns about vaccine safety, mistrust of drug companies, and recommended age. Some mothers and girls had the erroneous perception that girls do not need the vaccine until they become sexually active. African American adolescents and their mothers overwhelmingly thought campaigns should target both girls and boys for HPV vaccination. In addition, campaigns and messages may need to be tailored for pre-teens (ages 9-12) versus teens (ages 13-18) and their parents. CONCLUSIONS: Findings pointed to the need to "normalize" the perception of HPV vaccine as just another routine vaccine (e.g., part of pre-teen vaccine package). Findings can inform social marketing campaigns targeting Undecided or ethnically diverse families.

Cancer disparities in Appalachian Kentucky.

PURPOSE: Cancer is the second leading cause of death in the United States, and the disease burden is elevated in Appalachian Kentucky, due in part to health behaviors and inequities in social determinants of health. This study's goal was to evaluate Appalachian Kentucky's cancer burden compared to non-Appalachian Kentucky, and Kentucky compared to the United States (excluding Kentucky). METHODS: The following data were analyzed: annual all-cause and all-site cancer mortality rates from 1968 to 2018; 5-year all-site and site-specific cancer incidence and mortality rates from 2014 to 2018; aggregated screening and risk factor data from 2016 to 2018 for the United States (excluding Kentucky), Kentucky, non-Appalachian Kentucky, and Appalachian Kentucky; and human papilloma virus vaccination prevalence by sex from 2018 for the United States and Kentucky. FINDINGS: Since 1968, the United States has experienced a large decrease in all-cause and cancer mortality, but the reduction in Kentucky has been smaller and slower, driven by even smaller and slower reductions within Appalachian Kentucky. Appalachian Kentucky has higher overall cancer incidence and mortality rates and higher rates for several site-specific cancers compared to non-Appalachian Kentucky. Contributing factors include screening rate disparities and increased rates of obesity and smoking. CONCLUSIONS: Appalachian Kentucky has experienced persistent cancer disparities, including elevated all-cause and cancer mortality rates for 50+ years, widening the gap between this region and the rest of the country. In addition to addressing social determinants of health, increased efforts aimed at improving health behaviors and increased access to health care resources could help reduce this disparity.

Trends in Oral Tongue Cancer Incidence in the US.

Importance: Oral tongue cancer (OTC) incidence has increased rapidly among young (<50 years) non-Hispanic White individuals in the US during the past 2 decades; however, it is unknown if age-associated trajectories have persisted. Objective: To examine US trends in OTC incidence and project future case burden. Design, Setting, and Participants: This cross-sectional analysis of OTC incidence trends used the US Cancer Statistics Public Use Database, which covers approximately 98% of the US population, and included individuals with an OTC diagnosis reported to US cancer registries between January 1, 2001, and December 31, 2019. Exposures: Sex, race and ethnicity, and age. Main Outcomes and Measures: Estimated average annual percentage change in OTC incidence from 2001 to 2019. Given the substantial incidence rate increases among non-Hispanic White individuals compared with those of racial and ethnic minority groups, subsequent analyses were restricted to non-Hispanic White individuals. Forecasted OTC incidence trends and case burden among non-Hispanic White individuals to 2034. Results: There were 58 661 new cases of OTC identified between 2001 and 2019. Male individuals (57.6%), non-Hispanic White individuals (83.7%), those aged 60 years or older (58.0%), and individuals with localized stage disease at diagnosis (62.7%) comprised most cases. OTC incidence increased across all age, sex, and racial and ethnic groups, with marked increases observed among non-Hispanic White individuals (2.9% per year; 95% CI, 2.2%-3.7%). Increases among female individuals aged 50 to 59 years were most notable and significantly outpaced increases among younger non-Hispanic White female individuals (4.8% per year [95% CI, 4.1%-5.4%] vs 3.3% per year [95% CI, 2.7%-3.8%]). While all non-Hispanic White birth cohorts from 1925 to 1980 saw sustained increases, rates stabilized among female individuals born after 1980. Should trends continue, the burden of new OTC cases among non-Hispanic White individuals in the US is projected to shift more toward older individuals (from 33.1% to 49.3% among individuals aged 70 years or older) and female individuals (86% case increase vs 62% among male individuals). Conclusions and Relevance: The results of this cross-sectional study suggest that the period of rapidly increasing OTC incidence among younger non-Hispanic White female individuals in the US is tempering and giving way to greater increases among older female individuals, suggesting a birth cohort effect may have been associated with previously observed trends. Recent increases among non-Hispanic White individuals 50 years or older of both sexes have matched or outpaced younger age groups. Continuing increases among older individuals, particularly female individuals, may be associated with a shift in the OTC patient profile over time.

Undiagnosed Cancer Cases in the US During the First 10 Months of the COVID-19 Pandemic.

Importance: The COVID-19 pandemic disrupted the normal course of cancer screening and detection in the US. A nationwide analysis of the extent of this disruption using cancer registry data has not been conducted. Objective: To assess the observed and expected cancer rate trends for March through December 2020 using data from all 50 US states and the District of Columbia. Design, Settings, and Participants: This was a population-based cross-sectional analysis of cancer incidence trends using data on cases of invasive cancer diagnosis reported to the US Cancer Statistics from January 1, 2018, through December 31, 2020. Data analyses were performed from July 6 to 28, 2023. Exposure(s): Age, sex, race, urbanicity, and state-level response to the COVID-19 pandemic at the time of cancer diagnosis. Main Outcomes and Measures: Used time-series forecasting methods to calculate expected cancer incidence rates for March 1 through December 31, 2020, from prepandemic trends (January 2018-February 2020). Measured relative difference between observed and expected cancer incidence rates and numbers of potentially missed cancer cases. Results: This study included 1 297 874 cancer cases reported in the US from March 1 through December 31, 2020, with an age-adjusted incidence rate of 326.5 cases per 100 000 population. Of the observed cases, 657 743 (50.7%) occurred in male patients, 757 106 (58.3%) in persons 65 years or older, and 1 066 566 (82.2%) in White individuals. Observed rates of all-sites cancer incidence in the US were 28.6% (95% prediction interval [PI], 25.4%-31.7%) lower than expected during the height of the COVID-19 pandemic response (March-May 2020); 6.3% (95% PI, 3.8%-8.8%) lower in June to December 2020; and overall, 13.0% (95% PI, 11.2%-14.9%) lower during the first 10 months of the pandemic. These differences indicate that there were potentially 134 395 (95% PI, 112 544-156 680) undiagnosed cancers during that time frame. Prostate cancer accounted for the largest number of potentially missed cases (22 950), followed by female breast (16 870) and lung (16 333) cancers. Screenable cancers saw a total rate reduction of 13.9% (95% PI, 12.2%-15.6%) compared with the expected rate. The rate of female breast cancer showed evidence of recovery to previous trends after the first 3 months of the pandemic, but levels remained low for colorectal, cervical, and lung cancers. From March to May 2020, states with more restrictive COVID-19 responses had significantly greater disruptions, yet by December 2020, these differences were nonsignificant for all sites except lung, kidney, and pancreatic cancer. Conclusions and Relevance: This cross-sectional analysis of cancer incidence trends found a substantial disruption to cancer diagnoses in the US during the first 10 months of the COVID-19 pandemic. The overall and differential findings can be used to inform where the US health care system should be looking to make up ground in cancer screening and detection.

Lung and Colorectal Cancer Disparities in Appalachian Kentucky: Spatial Analysis on the Influence of Education and Literacy.

Low educational attainment and high cancer incidence and mortality rates have long been a challenge in Appalachian Kentucky. Prior studies have reported disparities in cancer incidence and mortality between Appalachian and non-Appalachian populations, but the influence of education on this disparity has not been extensively studied. Herein, all cancers and two cancer sites with available screenings (colorectal and lung) were joined with education indicators (educational attainment and literacy) and one geographic indicator across all 120 Kentucky counties. This dataset was used to build choropleth maps and perform simple linear and spatial regression to assess statistical significance and to measure the strength of the linear relationship between county-level education and cancer-related outcomes in Appalachian and non-Appalachian Kentucky. Among all cancer sites, age-adjusted cancer incidence and mortality was higher in Appalachian versus non-Appalachian Kentucky. The percentage of the population not completing high school was positively correlated with increased colorectal and lung cancer incidence and mortality in Appalachia. Similarly, counties with a higher percentage of the population lacking basic literacy had the strongest correlation with colorectal and lung cancer incidence and mortality, which were concentrated in Appalachian Kentucky. Our findings suggest a need for implementing interventions that increase educational attainment and enhance basic literacy as a means of improving cancer outcomes in Appalachia.

Cancer InFocus: Tools for Cancer Center Catchment Area Geographic Data Collection and Visualization.

BACKGROUND: The NCI added Community Outreach and Engagement (COE) requirements for NCI-designated cancer centers in 2017, including the charge of characterizing the cancer burden in the geographic area served by their center (i.e., catchment area). Doing so helps cancer centers better identify needs and areas of inequality in their populations to guide research and outreach. To accomplish this, current and comprehensive data must be gathered from multiple sources and analyzed by the COE-a task that is tedious and inefficient. In this paper we present an efficient solution, known as Cancer InFocus, to collecting and visualizing quantitative data that we have generalized for use by other cancer centers on their catchment areas. METHODS: Cancer InFocus utilizes open source programming languages and modern data collection techniques to gather and transform publicly-available data from various sources for use in specific geographic contexts. RESULTS: Cancer InFocus delivers a choice of two routes for creating interactive online mapping applications that visualize cancer incidence and mortality rates, along with relevant social determinant and risk factor variables, at various geographic levels for a defined cancer center catchment area. CONCLUSIONS: Generalized software has been produced to collect and visualize data on any set of U.S. counties, which can be automated to continue providing the most up-to-date data. IMPACT: Cancer InFocus provides tools for cancer centers to accomplish the critical task of maintaining current and comprehensive catchment area data. The open source format will facilitate future enhancements through user collaboration.