Volume 37 Issue 6 Article 4
2023
Community Recommendations for Enhanced Regional Community Recommendations for Enhanced Regional Survivorship Outcomes: A Case for Social and Structural Survivorship Outcomes: A Case for Social and Structural Determinants of Health from a U.S. National Cancer Institute Determinants of Health from a U.S. National Cancer Institute (NCI) Designated Cancer Center
(NCI) Designated Cancer Center
Marcie S. Wright
Virginia Commonwealth University Alisa E. Brewer
Virginia Commonwealth University Matthew Wells
Virginia Commonwealth University Michael A. Preston
Virginia Commonwealth University, VCU Massey Cancer Center Maria D. Thomson
Virginia Commonwealth University Vanessa B. Sheppard
Virginia Commonwealth University, VCU Massey Cancer Center
Follow this and additional works at: https://digital.car.chula.ac.th/jhr
Part of the Community Health and Preventive Medicine Commons, and the Public Health Education and Promotion Commons
2586-940X/© 2023 The Authors. Published by College of Public Health Sciences, Chulalongkorn University. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
Community Recommendations for Enhanced
Regional Survivorship Outcomes: A Case for Social and Structural Determinants of Health from a U.S.
National Cancer Institute (NCI) Designated Cancer Center
Marcie S. Wright
a, Alisa E. Brewer
a,*, Matthew Wells
b, Michael A. Preston
b,c, Maria D. Thomson
b, Vanessa B. Sheppard
b,caCenter on Health Disparities, Virginia Commonwealth University, USA
bDepartment of Health Behavior&Policy, Virginia Commonwealth University, USA
cOffice of Health Equity&Disparities Research, VCU Massey Cancer Center, USA
Abstract
Background:The number of cancer survivors has increased drastically as a result of advances in early detection and treatment strategies. Nevertheless, many survivors in the cancer survivorship population face unique problems, risks, and needs. The study for this short report obtained qualitative data to assess barriers and facilitators to cancer care survivorship in urban and rural communities from a National Cancer Institute (NCI) Designated Cancer Center Catchment Area in the southeastern United States.
Methods: Thirty (n ¼30) community stakeholders participated in in-depth interviews. The interviews were audio- taped, transcribed, and coded by independent raters. Inter-rater reliabilities indicated adequate agreement [inter-rater reliability (r)¼0.79].
Results:Themes related to community health concerns, cancer survivorship services, access to physical activity, and access to fresh fruits and vegetables were identified. In addition, participants provided strategies to improve the reach, utilization, and outcomes of postdiagnosis community-based care services.
Conclusion:Integrated community-engaged approaches are needed to address local survivorship services impacted by the social and structural determinants associated with unhealthy lifestyles.
Keywords:Cancer survivorship care, Care plan services, Community needs, Qualitative research, Social determinants of health, Structural determinants of health
1. Introduction
T
he American Cancer Society uses the term survivor to refer to anyone who has ever been diagnosed with cancer, no matter where they are in the course of the disease. It is that there are 16.9 million cancer survivors in the United States and the number is projected to increase by 31.4%, to 22.2 million, by 2030 [1]. Population characteristics demonstrate that cancer survivors are often obeseand less active than those without cancer, and sur- vivors often continue to smoke [2]. Survivor lifestyle behaviors (i.e., smoking, alcohol consumption, and physical activity) are associated with higher risks of recurrence, other cancers, chronic or late-occurring effects of cancer treatment, and increased likelihood of preventable morbidity and mortality [1,3].
Sufficient evidence exists regarding postdiagnosis lifestyle health behaviors [4]. However, most studies focus on individual-level factors related to behaviors
Received 30 August 2022; revised 4 November 2022; accepted 6 November 2022.
Available online 6 June 2023
*Corresponding author.
E-mail address:[email protected](A.E. Brewer).
https://doi.org/10.56808/2586-940X.1038
2586-940X/©2023 College of Public Health Sciences, Chulalongkorn University. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
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without consideration of associated social and structural determinants, an observation also found by national research grants and international cancer surveillance reviews [5e7]. Studies inclusive of low and middle-income, urban and rural factors show that social and structural influences such as poor or limited access to resources (i.e., fresh and affordable foods, recreational resources, medical care), com- munity design (i.e., transportation systems, street connectivity, housing) and quality prevention (i.e., education, training, cancer control policy for care standards and social support) play important roles in perpetuating unhealthy lifestyles. This suggests the need for strategies that complement systems and policy change [5e11].
Growing survivorship rates and support for life after cancer urges public health toward coordinated, comprehensive, community-informed and approved support for care team management and follow-up [5,12,13]. However, effective response from health care depends on the identification of survivor needs [5,6,14]. To this end, patient-level needs assessments can help prioritize, guide, and evaluate services, e.g. electronic medical records to facilitate delivery of quality cancer survivorship care [5]. Such approaches grounded in survivor community input should provide meaningful op- portunities to participate in health promotion and improve access to care.
From a global perspective, while similarities in cancer care exist between countries, reported dif- ferences are epidemiology, symptoms, economic development, cultural and religious beliefs, cancer- specific care integration, and palliative care educa- tion [14]. While similarities and differences may vary, all are useful. Particularly at regional levels, these implications could be examined for prefer- ences and details, urban or rural, to be appreciated by tailored intervention. As surmised in studies by Loh et al. and Duangchan et al. what challenges have in common sets the stage for survivor-centric models that focus on cancer surveillance, but also
“the broad and unique physical and psychosocial needs of survivors” in which inclusive care teams can play a role [7,15].
The National Cancer Institute (NCI) defines catchment as the geographic area and population from which a cancer center draws patients. Obser- vations in the catchment can emphasize a need to address gaps in care. With regional partners, this study followed a community-driven approach 1) to interview key stakeholders in four NCI-Designated
Cancer Center catchment communities and 2) to identify perceived factors contributing to unhealthy postdiagnosis survivor outcomes.
2. Methods
2.1. Participants and sampling
Cancer Center engagement teams facilitated recruitment by emailing partnering stakeholder or- ganizations. The sampling framework focused on principles of appropriateness and adequacy [16].
Participants were eligible with existing partnership roles demonstrating years in community building and advocacy. Participants confirmed being “a community member and/or health care provider withfirst-hand knowledge about community cancer care services” during the consent process. In- terviews were conducted with thirty (n ¼ 30) stakeholders (23 women and 7 men) residing in two rural (n ¼ 19) and two urban locations (n ¼ 11).
Additional demographics at the participant level were not collected.
The audience represented by participants in this study is illustrated by cities and counties with the lowest life expectancy statewide (68 years), highest rates of obesity (42%), smoking (24%), food insecu- rity (26%), and excess drinking (22%). The entire catchment (66 localities) represents the majority of the state's Black (72%) and rural populations (59%) and a third of the state's uninsured [17]. Cancer incidence and mortality rates for the catchment are higher than the United States and among the highest in the state, driven by higher incidence for breast, lung, and prostate cancers and higher mortality for breast and lung cancers [17]. Other targeted cancers by regional incidence include colorectal and oral cancers.
2.2. Interview development
The researchers developed the interview script in partnership with community members. The inter- view was guided by open-ended questions on issues related to cancer prevention and control, survivor- ship, access to physical activity, and access to fresh fruits and vegetables. A small pilot was carried out to investigate the appropriateness of the questions, identify potential protocol issues, and provide hired community liaisons experience conducting in- depth, semi-structured interviews and building rapport with informants. The final interview guide
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consisted of two levels of questions: ten (n ¼ 10) main themes and eleven (n ¼ 11) follow-up ques- tions. Spontaneous verbal and non-verbal probing techniques were allowed.
2.3. Interview analysis
The interviews were audiotaped, transcribed, and checked for accuracy against original recordings.
Each interview lasted between 45 and 90 min. The research team created a coding scheme to identify and categorize related themes. Data were coded by responses to each question using the coding scheme as a guide. The research team also developed decision rules to standardize the process. Four independent raters coded the transcripts. Inter-rater reliability was calculated on the basis of percent agreement [inter- rater reliability (r)¼0.79]. Before analysis, raters met to discuss discrepant codes for consensus.
QSR NVivo qualitative software was used to perform content analyses of themes from interview data. Transcripts were imported into QSR NVivo as a rich text document followed by the coding scheme developed within the software. Each transcript was coded based on a consensus of coding pairs. Once codes were applied to all transcripts, QSR NVivo was used to extract coded responses by the matrix intersection of location, question, and response nodes. Themes were determined after achieving data saturation [16].
2.4. Ethical issue
Datasets from this study are not public but avail- able at reasonable request. The Cancer Center's University Institutional Review Board approved this study [HM20018062 approved 2020-10-20; expiration 2023-10-20].
3. Results
3.1. Health concerns in the community
Participants were asked what types of health concerns impacted their community. In response, a majority of the participants, regardless of their geographic location mentioned cancer, diabetes, cardiovascular disease,andobesity.
3.2. Cancer survivorship services
Participants were asked what survivorship services (i.e., cancer rehabilitation services, support groups, patient navigators) were available in their community.
Two themes related to cancer survivorship services
were identified. Specifically, poor knowledge regarding the availability of services“I don't know if they even exist”andlack of access to services“we need more resources”;“we don't have those types of ser- vices here”emerged.
3.3. Access to physical activity
When asked“what physical activities are available in your community,” participants, regardless of geographic location, consistently mentioned that membership costwas a barrier to engaging in physical activity. A majority of participants residing in rural geographic communities reported access to fitness centers as a barrier “there are not a lot of options here”. When options were mentioned, the YMCA was most frequently reported for rural participants. Most participants residing in metropolitan areas did not report access tofitness centers as a barrier. However, access to safe outdoor spacesdid emerge.
3.4. Access to fresh fruits and vegetables
When asked “do you have access to fresh fruits and vegetables” themes emerged regardless of geographic location. Specifically, the majority of participants reported cost and poor access as bar- riers to eating fresh fruits and vegetables. A majority of the participants with access to fresh fruits and vegetables reported shopping at farmers markets/
community markets and seasonal fruit stands, as opposed to grocery chains.
3.5. Strategies for improving services
Several strategies emerged to improve community health outcomes. Table 1 identifies examples provided by participants to improve outcomes of postdiagnosis community-based cancer services.
Regardless of geographic location, most participants suggested improving access to healthy nutrition, increasing access toeducation/educators(to increase awareness of local services and general knowledge about post-diagnosis cancer care and survivorship), and increasing access to cancer rehabilitative ser- vices. In addition, participants residing in rural areas suggested increasing access to supportgroups, providing additional community resources(physical activity, nutrition, navigators to assist with follow- up), and transportationto services.
4. Discussion
The results of this study suggest that integrated community-engaged approaches are needed to
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address survivorship services for social and structural determinants associated with unhealthy lifestyles.
Participants requested raised awareness of available resources similar to studies citing why patients may not find their way to services even when actively seeking them [18]. Similar to a previous study, health resource access generated more concern in rural areas [19]. Local solutions of enhanced or new community resources may address participation gaps. As for physical activity and fresh fruits and vegetables, community-driven solutions aimed at reducing financial burden are justifiable [20]. Likewise, there may be missed opportunities to use telemedicine to increase access to health professionals who can pro- mote physical activity and fruit and vegetable con- sumption in hard-to-reach communities [21e23].
Study findings also suggest several strategies for improving community-based supportive care ser- vices. Specifically, nutrition and lifestyle support through educational workshops combined with mar- keting to increase community awareness and knowl- edge of local services are deemed necessary. These sessions could be conducted in concert with outreach teams and community organizations (e.g., libraries, faith-based entities, etc.). Studyfindings agree rural communities may benefit most from increased access to support groups bridging physical activity, nutrition and clinical care, and transportation [19].
With stakeholder feedback, the NCI-Designated Cancer Center has facilitated initiatives to improve survivorship care. In addition to increased collab- orations with community partners (e.g. farmer's markets, food banks, community health workers, civic groups, and faith-based organizations), the team has established a comprehensive outreach
program to increase access in rural and under- served communities and supported a new screening initiative assessing determinants of health for cancer patients before they are discharged from the hospital. Both programs demonstrate the benefit of coordinating organiza- tional support with community engagement to address social and structural determinants of health on a large scale. The outreach program balances population challenges of transportation and mobility with “pop up” in-person education, screening, and navigation via a mobile van unit supplemented by telemedicine delivering sched- uled genetic cancer risk assessment, palliative care, tobacco cessation, and patient navigation. With the support of outreach workers, the hospital initiative screens patients at admission for results recorded in electronic health records, integrated into medical team rounds, and used to inform discharge plans with considerations for food, housing, and trans- portation, e.g. a week's supply of heart healthy food provided at discharge along with connection to community partners for long-term solutions and support [24].
5. Recommendations
Limitations to this study include recruitment biases and sample size. Participants were identified based on working relationships. However, a convenience sample was not inappropriate by qualitative design.
Regarding sample size, the entire NCI-Designated Cancer Center catchment includes 66 contiguous lo- calities home to approximately 4 million individuals.
While this study included representation from both
Table 1. Community strategies to improve cancer care services.
Category Examples
Nutrition Farmers markets should accept EBT cards
Pop-up fruit and vegetable stands Community gardens
School markets
Education/Educators Repository for community leaders or key stakeholders who can share the information with their community
Cancer Services Mobile units (i.e., Mammography vans; Dental vans) Offer free services/monetary donations
Increase/Offer support groups (survivors and family members) Social workers/Nurse navigators should assist in linking the community
to available services
Improve/Reduce gaps in the referral system
Cancer survivorship plans should be based on available community resources
Community Resources Increase access to sidewalks
Increase access to safe outdoor spaces
Transportation Expand partnerships with local churches (i.e., utilize church vans) Offer care van rides
Offer reduced bus fares
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urban and rural communities, the participants rep- resented four primary co-located sites.
Another limitation pertains to whether the com- munity-based strategies to improve postdiagnosis care services are applicable to all survivors and cancer types. This was not observed in the data. By general scope and intent, the interview questions were designed to summarize survivorship experi- ence across cancers and did not separate results per cancer type. Demographic reports of participant survivorship or targeted cancers by region also could not generalize whether certain cancers or survivor types require different care. However, as Nekhlyudov et al. note, these levels of inquiry may help match care plans to survivor benefit, e.g.
“elderly men with early-stage prostate cancer may derive the most benefit from an emphasis on man- agement of chronic medical conditions, whereas adult survivors of childhood cancer may have broad needs that must include attention to most of the domains presented”[5].
Continued research warrants a more compre- hensive survey of catchment needs. Regional esti- mates captured in this study could also be compared with national estimates, inclusive of rural-urban differences, to inform local needs per population health assessment recommendations in cancer prevention, policies, and programs [20,25,26].
6. Conclusions
Thefindings from this study suggest that effective cancer survival care requires local solutions that are based on community needs, available resources, and trustworthy and collaborative partnerships.
These solutions should not only address the clinical component of post diagnosis care but the social and structural determinants associated with unhealthy lifestyles. In addition, this study highlights barriers unique to rural communities. To increase cancer care validity and ensure effectiveness, a community- engaged infrastructure is critical to adequately account for the individual, family, and community- level facilitators and barriers that may contribute to unfavorable postdiagnosis outcomes.
Funding
This work was supported by the NCI-Designated VCU Massey Cancer Center with funding from the NIHeNCI Cancer Center Support Grant (CCSG) [P30CA016059]; Clinical and Translational Science Award (CTSA) from the NIH National Center for Advancing Translational Sciences [KL2TR002648];
Institutional Research Grant of the American
Cancer Society [IRG-18-159-43]; and Virginia To- bacco Region Revitalization Commission.
Conflict of interest
The funders had no role in the study design, data collection and analysis, preparation, or decision to publish. The authors have no financial or other disclosures to make relevant to this manuscript submission.
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