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PURPOSE: Lesbian, gay, bisexual, transgender, and queer (LGBTQ+) individuals who receive primary care services at community health centers are often referred to external specialty care centers after cancer diagnosis, upon which primary care services are disrupted and may be discontinued because of gaps in communication between primary and oncologic care providers. This qualitative study evaluated barriers and facilitators to effective care coordination for LGBTQ+ patients with cancer and the utility of a novel cancer care coordination tool to mitigate identified barriers. MATERIALS AND METHODS: Semistructured interviews with LGBTQ+ cancer survivors, caregivers to LGBTQ+ persons, clinical team members who provide care to LGBTQ+ patients, and members of community-based organizations that work with LGBTQ+ patients were conducted. Interview analysis was a multistage process, wherein a constant comparison approach was used. Transcripts were reviewed and coded using Atlas.ti Cloud. RESULTS: A total of 26 individuals were interviewed: 10 patients, four caregivers, 10 clinical care team members, and two community organization representatives. Interview analysis yielded insight regarding (1) LGBTQ+ patient experiences engaging with primary and oncologic care at the clinic level and (2) perceptions of patient-provider and provider-provider communication and coordination. CONCLUSION: Interview findings indicate a need for further development of interventions aimed at improving care coordination, patient experience, and outcomes in the cancer care continuum for LGBTQ+ patients. Learning health systems, like the one studied, show great potential for contributing to the development of such interventions.

Racial health disparities continue to greatly impact the incidence and mortality rates of gynecologic cancers. Although there are many drivers for these disparities, limited inclusion of vulnerable populations in clinical research and narrowed medical knowledge of patients are large contributors that disproportionately affect racial/ethnic communities. To mitigate these disparities, we must look for avenues that connect patients from these communities to cancer researchers. In this review, we summarize 2 projects that can serve as models for future interventions that promote education and engagement in clinical research for populations most impacted by gynecologic cancer disparities.

Background: Members of the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community experience health disparities stemming from factors that include barriers to access, such as lack of LGBTQ-competent providers, discrimination, avoidance of care due to concerns about mistreatment, low income, unstable housing and lack of insurance. LGBTQ individuals have reduced rates of cancer screening which may lead to delayed diagnosis, have disproportionately higher rates of certain cancers, and are at elevated risk for many comorbidities, including mental health conditions, substance abuse, smoking-related diseases, cardiovascular disease and HIV. Community health clinics serve a critical role in the health of LGBTQ patients with cancer, however referral to institutionally-disconnected cancer specialists often disrupts care received at their primary care medical home, leaving a large gap in integrated primary care services. Thus, upon cancer diagnosis, LGBTQ patients become vulnerable to disruptions in support systems and fragmentation of cancer and primary care. The 4R model (Right information and Right Care for the Right Patient at the Right Time) is a novel approach our team developed to facilitate cancer planning, as a vehicle for patient enablement and team-based care delivery across the oncology and primary care continuum. The goal of our project is to identify barriers and facilitators to implementation of the 4R model as a component of care delivered to LGBTQ cancer survivors and later develop a protocol tailored to optimally meet the needs and preferences of LGBTQ cancer survivors, including overcoming barriers to optimal care that are presented by fragmentation of multi-level care at sites nationwide. Methods: In collaboration with one of the largest healthcare organizations caring primarily for an LGBTQ population, semi-structured interviews are being conducted with clinical care team members (N=10), patients (N=25), family/caregivers (N=10), and community organizations (N=5) in order to identify barriers and facilitators to implementation of the 4R model as a component of care delivered to LGBTQ cancer survivors. A Rapid Analysis Process, which is a qualitative analysis method recommended for circumstances in which a quick analysis is required to adopt changes to an ongoing process, will be utilized. Results: Interviews with clinical team members and stakeholder feedback with our FQHC partner site indicate a lack of research in and need to providing appropriate and effective cancer care coordination for the LGBTQ population. Interviews conducted with various stakeholder groups will reveal important considerations in (1) initiating cancer care, (2) providing appropriate supports and resources, (3) addressing comorbid conditions, and (4) providing follow up cancer monitoring, specifically for LGBTQ individuals. Citation Format: Nicolas Francone, Jonathan Alhalel, Will Dunne, Sankirtana Danner, Nihmotallahi Adebayo, Toni Madorsky, Cassandra Osei, Juan Rivera, Julia Trossman, Christine Weldon, Elizabeth Adetoro, Melissa Simon. Adapting a novel cancer care delivery model: identifying barriers unique to care coordination for LGBTQ cancer survivors [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2021; 2021 Apr 10-15 and May 17-21. Philadelphia (PA): AACR; Cancer Res 2021;81(13_Suppl):Abstract nr 2552.

Background: Lesbian, gay, bisexual, transgender and queer (LGBTQ) individuals experience health disparities at disproportionate rates that drive reduced cancer screenings and late-stage cancer diagnoses. Community health centers play critical roles in providing primary care services to LGBTQ+ patients with cancer. Patients diagnosed with cancer and referred to specialty care outside health centers, however, often experience disruptions to their primary care services due to gaps in communication between primary and oncology care providers. The © 4R Oncology Model (Right Information and Right Care for the Right Patient at the Right Time) is a novel, patient-centric care coordination tool developed to facilitate cancer planning and serves as a longitudinal primary care checklist for use by patients and their care team. Our project aims to assess the facilitators and barriers of 4R as a component of primary and specialized care delivered to LGBTQ+ cancer survivors. Methods: We conducted semi-structured interviews with patients and their caregivers (n =12) and stakeholders (n=12) to assess facilitators and barriers to 4R implementation as a component of care delivered to LGBTQ+ cancer survivors. Research team members deductively identified initial themes from interview transcripts. Preliminary coding schemes were compared among three team members and refined by inductive coding to produce a higher-level study codebook. With this codebook, team members ultimately utilized ATLAS.ti, a qualitative data analysis software, to independently analyze interview transcripts, with discrepancies in coding resolved through team-wide discussions. Results: Patients, their caregivers, and stakeholders agree that the 4R model shows potential for use as a first-step intervention to address primary care gaps caused by inadequate care coordination. Suggested improvements to the model include a reduction of textual information and an increased emphasis on mental and emotional support resources on the model’s sequence of care form. Conclusions: Interim findings indicate that a lack of adequate research on solutions to the disruption of primary care services caused by the initiation of cancer care for LGBTQ+ cancer survivors is a significant barrier for this patient population. The 4R Oncology Model thus shows promise as a solution for initiating and sustaining more continuous communication between primary care and cancer care delivery for LGBTQ+ cancer survivors. Continued analysis of study interviews will further elucidate facilitators and barriers to cancer care coordination for LGBTQ+ individuals, while further informing iterations to the 4R model for the development of a national protocol aimed at improving access to care and outcomes for LGBTQ+ individuals and other underserved groups. Citation Format: Nihmotallahi Adebayo, Will Dunne, Sankirtana Danner, Juan A. Rivera, Elena Molina, Abbey Ekong, Elizabeth Adetoro, Cori Blum, Cassandra Osei, Julia Trosman, Christine Weldon, Melissa Simon. Assessing the facilitators and barriers of a novel cancer care delivery model adapted for the care coordination of LGBTQ+ cancer survivors [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2022; 2022 Apr 8-13. Philadelphia (PA): AACR; Cancer Res 2022;82(12_Suppl):Abstract nr LB169.