Roadmap to engagement: Bringing patient partners into cancer research and beyond.

The University of Kansas Cancer Center (KU Cancer Center) initiated an engagement program to leverage the lived experience of individuals and families with cancer. KU Cancer Center faculty, staff, and patient partners built an infrastructure to achieve a patient-designed, patient-led, and research-informed engagement program called Patient and Investigator Voices Organizing Together (PIVOT). This special communication offers an engagement roadmap that can be replicated, scaled, and adopted at other cancer centers and academic health systems. PIVOT demonstrates that collaboration among academic leaders, investigators, and people with a lived experience yields a patient-centered, vibrant environment that enriches the research enterprise.

A community engagement training program for basic and translational cancer researchers.

PURPOSE: There is an increasing awareness of the importance of patient engagement in cancer research, but many basic and translational researchers have never been trained to do so. To address this unmet need, a 1-year patient engagement training program for researchers was developed. METHODS: Eleven researchers and eleven paired research advocates participated. This program, designed for virtual delivery, included 3 didactic modules focused on (1) Community Outreach and Engagement principles and methods, (2) Communication skills, and (3) Team Science. This was followed by longitudinal projects to be completed by the researcher/advocate pairs, including learning about the research project, and co-authoring abstracts, manuscripts and grant proposals. Monthly group meetings allowed pairs to share their experiences. The program culminated in the pairs creating and presenting oral abstracts for the University of Kansas Cancer Center's Annual Research Symposium. RESULTS: All participants indicated that the modules had a positive impact on their ability to collaborate in research. Both researcher self-evaluations and patient advocate evaluations of their researcher partner showed an improvement in researcher communication competency. Results from the Patient Engagement in Research Scale showed that advocates were highly engaged. Within 1 year after program completion, participating pairs have completed four abstracts and 9 grant proposals. CONCLUSION: The program will be modified based on participant feedback, and can be adapted for future cohorts if an increased number of sessions per month and shortened program duration are desired. The program's virtual format allows scalability across institutions to potentially benefit large cohorts of researchers.

Rural-Urban Disparities in Health Access Factors Over Time: Implications for Cancer Prevention and Health Equity in the Midwest.

Purpose: Population-level environmental and socioeconomic factors may influence cancer burden within communities, particularly in rural and urban areas that may be differentially impacted by factors related to health care access. Methods: The University of Kansas (KU) Cancer Center serves a geographically large diverse region with 75% of its 123 counties classified as rural. Using County Health Rankings data and joinpoint regression, we examined trends in four factors related to the socioeconomic environment and health care access from 2009 to 2017 in rural and urban counties across the KU Cancer Center catchment area. Findings: The adult health uninsurance rate declined significantly in rural and urban counties across the catchment area (rural annual percent change [APC]=-5.96; 95% CI=[-7.71 to -4.17]; urban APC=-5.72; 95% CI=[-8.03 to -3.35]). Childhood poverty significantly decreased in rural counties over time (APC=-2.94; 95% CI=[-4.52 to -1.33]); in contrast, urban childhood poverty rates did not significantly change before 2012 (APC=3.68; 95% CI=[-15.12 to 26.65]), after which rates declined (APC=-5.89; 95% CI=[-10.01 to -1.58]). The number of primary care providers increased slightly but significantly in both rural and urban counties (APC=0.54; 95% CI=[0.28 to 0.80]), although urban counties had more primary care providers than rural areas (76.1 per 100K population vs. 57.1 per 100K population, respectively; p=0.009). Unemployment declined significantly faster in urban counties (APC=-10.33; 95% CI=[-12.16 to -8.47]) compared with rural counties (APC=-6.71; 95% CI=[-8.22 to -5.18]) (p=0.02). Conclusion: Our findings reveal potential disparities in systemic factors that may contribute to differences in cancer prevention, care, and survivorship in rural and urban regions.

Barriers to Clinical Trial Participation: Comparative Study Between Rural and Urban Participants.

BACKGROUND: The National Clinical Trials Network program conducts phase 2 or phase 3 treatment trials across all National Cancer Institute's designated cancer centers. Participant accrual across these clinical trials is a critical factor in deciding their success. Cancer centers that cater to rural populations, such as The University of Kansas Cancer Center, have an additional responsibility to ensure rural residents have access and are well represented across these studies. OBJECTIVE: There are scant data available regarding the factors that act as barriers to the accrual of rural residents in these clinical trials. This study aims to use electronic screening logs that were used to gather patient data at several participating sites in The Kansas University of Cancer Center's Catchment area. METHODS: Screening log data were used to assess what clinical trial participation barriers are faced by these patients. Additionally, the differences in clinical trial participation barriers were compared between rural and urban participating sites. RESULTS: Analysis revealed that the hospital location rural urban category, defined as whether the hospital was in an urban or rural setting, had a medium effect on enrolment of patients in breast cancer and lung cancer trials (Cohen d=0.7). Additionally, the hospital location category had a medium effect on the proportion of recurrent lung cancer cases at the time of screening (d=0.6). CONCLUSIONS: In consideration of the financially hostile nature of cancer treatment as well as geographical and transportation barriers, clinical trials extended to rural communities are uniquely positioned to alleviate the burden of nonmedical costs in trial participation. However, these options can be far less feasible for patients in rural settings. Since the number of patients with cancer who are eligible for a clinical trial is already limited by the stringent eligibility criteria required of such a complex disease, improving accessibility for rural patients should be a greater focus in health policy.

shinyOPTIK, a User-Friendly R Shiny Application for Visualizing Cancer Risk Factors and Mortality Across the University of Kansas Cancer Center Catchment Area.

PURPOSE: The University of Kansas Cancer Center (KU Cancer Center) recently developed a data warehouse to Organize and Prioritize Trends to Inform KU Cancer Center (OPTIK). The OPTIK database aggregates and standardizes data collected across the bistate catchment area served by the KU Cancer Center. To improve the usability of the OPTIK database, we developed shinyOPTIK, a user-friendly, interactive web application for visualizing cancer risk factor and mortality rate data across the KU Cancer Center Catchment area. METHODS: Data in the OPTIK database were first consolidated at the county level across the KU Cancer Center catchment area. Next, the shinyOPTIK development team met with the KU Cancer Center leadership to discuss the needs and priorities of the shinyOPTIK web application. shinyOPTIK was developed under the R Shiny framework and consists of a user interface (ui.R) and a web server (server.R). At present, shinyOPTIK can be used to generate county-level geographical heatmaps; bar plots of demographic, screening, and risk factors; and line plots to visualize temporal trends at different Rural-Urban Continuum Codes (RUCCs), rural-urban status, metropolitan, or county levels across the KU Cancer Center catchment area. RESULTS: Two examples, adult obesity prevalence and lung cancer mortality, are presented to illustrate how researchers can use shinyOPTIK. Each example is accompanied by post hoc visualizations to help explain key observations in terms of rural-urban disparities. CONCLUSION: Although shinyOPTIK was developed to improve understanding of spatial and temporal trends across the population served by the KU Cancer Center, our hope is that the description of the steps involved in the creation of this tool along with open-source code for our application provided herein will serve as a guide for other research centers in the development of similar tools.

Economics of Using Telemedicine to Supplement Hospice Care in Rural Areas.

Background: Hospice care in rural areas is often characterized by provider shortages and vast geographical service areas to cover, making access to quality end-of-life care challenging. Telemedicine, broadly, is the utilization of interactive televideo (ITV) technology to provide health services over a distance. For over 25 years, telemedicine has been proposed as a solution to address access issues. In 2015, the University of Kansas Medical Center (Kansas City, Kansas) partnered with Hospice Services, Inc. (HSI) (Phillipsburg, Kansas), to augment traditional, face-to-face (FTF) hospice care with hospice care delivered through mobile tablets. Objective: This work examines the costs of TeleHospice (TH) (telemedicine use in hospice care) when compared with the costs of FTF hospice services. Design: Detailed administrative data from July 1, 2018, to December 31, 2018, were analyzed to estimate the costs of service after TH use was inculcated into routine practice. Results: his, which averages a daily census of 34 patients, conducted 257 calls, averaging 28 hours a month. The average time for a TH call was 18 and 17 minutes for nursing and medical director calls, respectively. Through various hospice functions, including administrative, patient, and nonpatient-related connections, HSI saved over $115,000 in staff travel time and mileage reimbursement. Administratively, by hosting their weekly 15-member interdisciplinary meeting through ITV, HSI saved $29,869 of staff travel time and mileage reimbursement. Conclusions: Our estimates indicate substantial cost saving potential with the use of TH services. Further research is needed to assess the effects of TH utilization on the experiences and subsequent cost of hospice care.

OPTIK: a database for understanding catchment areas to guide mobilization of cancer center assets.

An increasingly diversified demographic landscape in rural and urban America warrants the attention of The University of Kansas Cancer Center (KU Cancer Center) researchers, clinicians, outreach staff and administrators as the institution assesses ways to reach its expansive, bi-state catchment area. Within the counties of the KU Cancer Center catchment area, patient level and public health data are available and categorized by varying geographic regional boundaries. Multiple data sources and different data collection processes complicate summarizing catchment area data. A curated data warehouse that retrieves and structures the data, with a common denominator, can support meaningful use of the data in a standard and consistent format. The KU Cancer Center built a data warehouse to Organize and Prioritize Trends to Inform KU Cancer Center (OPTIK), which functions to streamline the process of synthesizing data regarding Kansas and Missouri demographics, cancer risk factors and incidence and mortality rates. OPTIK standardizes these diverse data sources to enable analyses of the cancer burden at local, regional and national levels while upholding a strict standard of patient privacy. The OPTIK database enables researchers to use available data and create heat maps and other visualizations to aid in funding proposals, presentations and research activities. Furthermore, using knowledge provided by OPTIK, the KU Cancer Center is able to prioritize action items for research and outreach and more effectively communicate the impact of those efforts.

TeleHospice: A Community-Engaged Model for Utilizing Mobile Tablets to Enhance Rural Hospice Care.

BACKGROUND: In rural communities, providing hospice care can be a challenge. Hospice personnel sometimes travel great distances to reach patients, resulting in difficulty maintaining access, quality, cost-effectiveness, and safety. In 1998, the University of Kansas Medical Center piloted the country's first TeleHospice (TH) service. At that time, challenges with broad adoption due to cost and attitudes regarding technology were noted. A second TH project was launched in early 2017 using newer technology; this article updates that ongoing implementation. METHODS: The Organizational Change Manager was followed for the guided selection of the hospice partner. The University of Kansas Medical Center partnered with Hospice Services, Inc. (HSI), a leader in rural hospice care, providing services to 16 Kansas counties. Along with mobile tablets, a secure cloud-based videoconferencing solution was chosen for ease of use. RESULTS: From August 2017 through January 2018, 218 TH videoconferencing encounters including 917 attendees occurred. Calls were made for direct patient care, family support, and administrative purposes. These TH calls have been shown to save HSI money, and initial reports suggest they may strengthen the communication and relationships between staff, patients, and the patient's family. CONCLUSION: Finding innovative, cost-effective, and community-driven approaches such as TH are needed to continually advance hospice care. TeleHospice's potential to supplement and improve hospice services while reducing costs is significant, but continued research is needed to understand best fit within frontier hospices, to inform future urban applications, and to address reimbursement.

Expanding Local Cancer Clinical Trial Options: Analysis of the Economic Impact of the Midwest Cancer Alliance in Kansas.

PURPOSE: Patients benefit from receiving cancer treatment closer to home when possible and at high-volume regional centers when specialized care is required. The purpose of this analysis was to estimate the economic impact of retaining more patients in-state for cancer clinical trials and care, which might offset some of the costs of establishing broader cancer trial and treatment networks. METHOD: Kansas Cancer Registry data were used to estimate the number of patients retained in-state for cancer care following the expansion of local cancer clinical trial options through the Midwest Cancer Alliance based at the University of Kansas Medical Center. The 2014 economic impact of this enhanced local clinical trial network was estimated in four parts: Medical spending was estimated on the basis of National Cancer Institute cost-of-care estimates. Household travel cost savings were estimated as the difference between in-state and out-of-state travel costs. Trial-related grant income was calculated from administrative records. Indirect and induced economic benefits to the state were estimated using an economic impact model. RESULTS: The authors estimated that the enhanced local cancer clinical trial network resulted in approximately $6.9 million in additional economic activity in the state in 2014, or $362,000 per patient retained in-state. This estimate includes $3.6 million in direct spending and $3.3 million in indirect economic activity. The enhanced trial network also resulted in 45 additional jobs. CONCLUSIONS: Retaining patients in-state for cancer care and clinical trial participation allows patients to remain closer to home for care and enhances the state economy.

Searching for cures: Inner-city and rural patients' awareness and perceptions of cancer clinical trials.

Fewer than 5% of cancer patients participate in clinical trials, making it challenging to test new therapies or interventions for cancer. Even within that small number, patients living in inner-city and rural areas are underrepresented in clinical trials. This study explores cancer patients' awareness and perceptions of cancer clinical trials, as well as their perceptions of patient-provider interactions related to discussing cancer clinical trials in order to improve accrual in cancer clinical trials. Interviews with 66 former and current in inner-city and rural cancer patients revealed a lack of awareness and understanding about clinical trials, as well as misconceptions about what clinical trials entail. Findings also revealed that commercials and television shows play a prominent role in forming inner-city and rural patients' attitudes and/or misconceptions about clinical trials. However, rural patients were more likely to hold unfavorable views about clinical trials than inner-city patients. Patient-provider discussions emerged as being crucial for increasing awareness of clinical trials among patients and recruiting them to trials. Findings from this study will inform communication strategies to enhance recruitment to cancer clinical trials by increasing awareness and countering misconceptions about clinical trials.

A Collaborative Step-Wise Process to Implementing an Innovative Clinic for Adult Survivors of Childhood Cancer.

With a 5 year survival rate of approximately 80%, there is an increasing number of childhood cancer survivors in the United States. Childhood cancer survivors are at an increased risk for physical and psychosocial health problems many years after treatment. Long-term follow-up care should include education, development of individualized follow up plans and screening for health problems in accordance with the Children's Oncology Group survivor guidelines. Due to survivor, provider and healthcare system related barriers, adult survivors of childhood cancer (ASCC) infrequently are receiving care in accordance to these guidelines. In this paper we describe the stepwise process and collaboration between a children's hospital and an adult academic medical center that was implemented to develop the Survivorship Transition Clinic and address the needs of ASCC in our region. In the clinic model that we designed ASCC follow-up with a primary care physician in the adult setting who is knowledgeable about late effects of childhood cancer treatment and are provided transition support and education by a transition nurse navigator.

'Cancer changes everything!' Exploring the lived experiences of women with metastatic breast cancer.

STUDY PURPOSE: The aim of this study was to further explore the lived experiences of women with metastatic breast cancer (MBC), to inform the development of interventions to enhance survivorship care for women with advanced disease. METHODOLOGY: Four semi-structured focus groups were conducted with women with MBC. The data was analysed using qualitative content analysis. RESULTS: Participants described the challenges of living with uncertainty, as a result of a lack of information regarding treatment options and symptom management, and a sense of the unknown related to prognosis and survival. Of major concern were changes in role functioning, altered relationships, and self-image. CONCLUSION: Women with metastatic breast cancer must cope with dramatic changes in all aspects of their lives. Clinicians should tailor survivorship care and evidence-based interventions to individuals' concerns with changes in role functioning, fatigue, relationships, and self-image. A multidisciplinary approach should be used to address practical and existential concerns focused on improving quality of life.

Adapting and implementing an evidence-based sun-safety education program in rural Idaho, 2012.

BACKGROUND: Melanoma incidence and mortality rates in Idaho are higher than national averages. The importance of increased awareness of skin cancer has been cited by state and local organizations. St. Luke's Mountain States Tumor Institute (MSTI) prioritized educational outreach efforts to focus on the implementation of a skin cancer prevention program in rural Idaho. COMMUNITY CONTEXT: As a community cancer center, MSTI expanded cancer education services to include dedicated support to rural communities. Through this expansion, an MSTI educator sought to partner with a community organization to provide sun-safety education. MSTI selected, adapted, and implemented an evidence-based program, Pool Cool. METHODS: The education program was implemented in 5 phases. In Phase I, we identified and recruited a community partner; in Phase 2, after thorough research, we selected a program, Pool Cool; in Phase 3, we planned the details of the program, including identification of desired short- and long-term outcomes and adaptation of existing program materials; in Phase 4, we implemented the program in summer 2012; in Phase 5, we assessed program sustainability and expansion. OUTCOME: MSTI developed a sustainable partnership with Payette Municipal Pool, and in summer 2012, we implemented Pool Cool. Sun-safety education was provided to more than 700 young people aged 2 to 17 years, and educational signage and sunscreen benefitted hundreds of additional pool patrons. INTERPRETATION: Community cancer centers are increasingly being asked to assess community needs and implement evidence-based prevention and screening programs. Clinical staff may become facilitators of evidence-based public health programs. Challenges of implementing evidence-based programs in the context of a community cancer centers are staffing, leveraging of resources, and ongoing training and support.

Understanding the functional late effects and informational needs of adult survivors of childhood cancer.

PURPOSE/OBJECTIVES: To report functional (physical and cognitive) late effects, experiences, and information needs of adult survivors of childhood cancer. DESIGN: Descriptive, mixed methods survey. SETTING: Two pediatric oncology programs in the Midwest. SAMPLE: Convenience sample of 272 young adult survivors. METHODS: Voluntary survey completion by young adult survivors regarding late effects, experiences, and educational needs to develop appropriate comprehensive care programs for care provision before, during, and after transition to adult care. Survey domains were identified from existing survivorship literature and focused on all aspects of survivorship; however, this article focuses on results specific to the functional domain. MAIN RESEARCH VARIABLES: Functional late effects, experiences, information needs, age, gender, and treatment intensity of young adult survivors of childhood cancer. FINDINGS: Response rate was 48%. Functional late effects, perceptions, and information needs all correlated with intensity of treatment (those survivors most heavily treated experienced the most symptoms). Survivors wanted more information about late effects and how to deal with them. Women wanted more information about fertility-related topics, and participants who received more intense treatment generally wanted more information. Brain tumor survivors perceived greater cognitive difficulties, cognitive late effects, fatigue, and financial difficulties. CONCLUSIONS: Survivors experience myriad physical late effects and require ongoing access to information as needs change over time. IMPLICATIONS FOR NURSING: Identifying new and innovative ways to reach survivors and better meet needs is important for care, research, and program development. KNOWLEDGE TRANSLATION: The findings of the research underscore the importance of continuous learning opportunities for adult survivors of childhood cancer. The findings also highlight the need for healthcare teams to better understand the current and long-term needs of this population. In addition to traditional communication approaches, technologies such as social media and telemedicine can provide innovative ways to deliver patient-centered care.

Increasing information-seeking about human papillomavirus vaccination through community partnerships in African American and Hispanic communities.

This study tested the feasibility of promoting 1-800-4-CANCER through partnerships with organizations serving African American and Hispanic communities. Small-media and client reminders about human papillomavirus vaccination were made available through local agents to 28 community organizations. Organizations ordered 79 932 resources and distributed them to young women and parents of girls-;African Americans in St Louis, Missouri, and Hispanics in the Lower Rio Grande Valley of Texas. Pre- to postintervention calls to 1-800-4-CANCER increased 38% in these communities, while declining 15% in comparison communities of Kansas City, Missouri, and El Paso, Texas (F = 8.6, P = .004) and 1.4% in the United States as a whole.

Comprehensive cancer control: progress and accomplishments.

The potential for Comprehensive Cancer Control (CCC) across the nation has been realized in the last decade with 69 Coalitions developing and implementing CCC plans. Many partners at all levels--national, state, jurisdictional, tribal and communities--have contributed to this success. This article details the contribution of these partners across these various levels, with a selection of the many activities contributing to this success. Consequently the cancer burden, although still of major importance, continues to be addressed in significant ways. Although there are future challenges, CCC coalitions continue to play an important role in addressing the cancer burden.

Developing competencies for training practitioners in evidence-based cancer control.

BACKGROUND: Competency-based education allows public health departments to better develop a workforce aimed at conducting evidence-based control cancer. METHODS: A 2-phased competency development process was conducted that systematically obtained input from practitioners in health departments and trainers in academe and community agencies (n = 60). RESULTS: Among the 26 competencies developed, 10 were rated at the beginner level, 12 were intermediate, and 4 were advanced. Community-level input competencies were seen as beginner level, whereas policy-related competencies were rated as advanced. CONCLUSION: Although adaptation to various audiences is needed, these competencies provide a foundation on which to build practitioner-focused training programs.