A novel, patient-centric care coordination tool could be a valuable resource in efforts to address disparities, as well as improve access to care and outcomes for lesbian, gay, bisexual, transgender, and queer (LGBTQ+) cancer patients, according to a recent study.
These findings were presented during the virtual 14th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved by Nihmotallahi Adebayo, MS, Will Dunne, and Sankirtana Danner, MA, all from the Center for Health Equity Transformation in the Feinberg School of Medicine at Northwestern University, Chicago (Abstract PO-021).
"Historically, LGBTQ patients have experienced significant disparities in cancer health outcomes, stemming from barriers such as a lack of LGBTQ+ competent providers, discrimination, and the avoidance of care due to concerns about abuse and mistreatment, all of which can lead to delayed cancer diagnosis," noted Danner.
"Community health centers are critical for providing primary care to LGBTQ+ patients with cancer," according to the study authors. "Unfortunately, once a patient is diagnosed with cancer and referred to specialty care outside the health center, primary care services are often disrupted or even discontinued as a result of gaps in communication between primary and oncological care providers."
Methods & Results
A novel, patient-centric care coordination tool developed to facilitate cancer planning, the 4R Oncology Model (Right Information and Right Care for the Right Patient at the Right Time) serves as a longitudinal primary care checklist for patients and their care team.
"The overall goal of the 4R project is to address these care gaps and improve care coordination for LGBTQ+ patients," said Danner, whose team sought to assess the benefits and limitations of the 4R Oncology Model. "As we're implementing 4R, we've simultaneously undertaken a qualitative effort to ensure it is best meeting the needs of LGBTQ+ patients," she explained, while highlighting the other aims of the project.
These include identifying barriers and facilitators to the implementation of the 4R model as a component of care delivered to LBGTQ+ cancer survivors. They also plan to use the findings obtained at Howard Brown Health Community Practice Care sites to refine and scale the 4R model to develop a broad protocol that can be deployed at a national level.
In collaboration with Howard Brown Health, the researchers conducted semi-structured interviews with patients and caregivers (N=9), as well as clinical care team members (N=10). A Rapid Analysis Process was used to evaluate interviews.
This qualitative method is recommended for use when a quick analysis is necessary to adopt changes to an ongoing process. It involved the creation of six neutral domain names, which were then assigned to corresponding interview questions, explained Adebayo. "Transcript summaries were also written for each interview and summaries were then transferred to a domain matrix to be assessed for main takeaways across interviews."
The six neutral domain names were: care coordination/communication; referrals/supports/resources; LGBTQ+ needs; experiences providing or receiving care; COVID/telehealth; and 4R feedback.
When looking at the first domain-care coordination/communication-the researchers found that lack of communication between primary and oncological care is often due to differences in the EMR used by health systems, according to Adebayo, who noted that this then places the burden of communication between primary and oncological care on the patient.
"On our second domain, [referrals/supports/resources], we found that although supports are available for patients, they are often missed because they're not well integrated into care processes by clinical providers," said Adebayo.
The research team's main takeaway from the third domain-LGBTQ+ needs-was that these patients often rely on community and chosen family. "Thus, it is important for care teams to be accepting of patient social situations, and to provide identity affirming care that ensures these patients feel welcomed and safe in medical settings," she explained.
When discussing the fourth domain, experiences providing or receiving care, Adebayo noted, "we found that a lack of information from specialists addressing the sexual health practices and needs of LGBTQ+ individuals makes patients uninformed and feeling isolated from medical settings."
In the fifth domain, the researchers explored COVID and telehealth. "We found that the impact of COVID on patient experiences navigating their primary and cancer care needs was multifaceted," reported Dunne. "Amidst the pandemic, many patients felt that they had to prioritize which care they were going to pursue, so primary care engagement often dropped significantly.
"And while patients did feel isolated by restrictions on in-person visits presented by the pandemic, many did feel that much of their telehealth services were adequate," he continued.
Throughout the interview process, Dunne noted that they received both encouraging and constructive feedback from patients and providers regarding the 4R patient navigation tool.
"Both groups we interviewed responded very positively to the 4R sequence of care form," he elaborated. "And both interview groups asserted that the tool would be most impactful if completed initially with a primary care provider, and further appreciated the tools highlighting of social, emotional and behavioral components of care."
Concluding the presentation, Dunne emphasized that identity affirming care and resources are pivotal for effective cancer care. "The 4R Oncology Model thus shows great potential for initiating and sustaining more continuous communication between primary and cancer care needs for LGBTQ+ survivors.
"Ultimately, moving forward, we will continue to conduct interviews with stakeholders to further elucidate barriers and facilitators to cancer care for LGBTQ+ patients," he concluded. "We will further continue to refine the 4R model and are excited by the opportunity to continue building a tool to improve cancer care coordination for LGBTQ+ patients."
Catlin Nalley is a contributing writer.