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Learning the Cancer Care Needs of LGBTQ+ Patients

Wolfgang, Kelly

doi: 10.1097/01.COT.0000693508.79442.84
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LGBTQ+ Patients
LGBTQ+ Patients:
LGBTQ+ Patients

The Perlmutter Cancer Center at NYU Langone Health recently introduced an initiative to raise awareness for LGBTQ+ patients with cancer. The program aims to educate clinicians and staff about the needs of this unique population to better enhance care. Backed by the center's transgender surgery services team, the initiative has already seen success in its first months.

Initiative lead Abraham Chachoua, MD, was inspired to launch the program from not only his own experience with LGBTQ+ patients, but by research conducted by colleague Gwendolyn Quinn, MD, PhD (J Clin Oncol 2019;37: 547-558), which found that lesbian, gay, bisexual, transgender, and queer/questioning patients are medically underserved.

Of the 149 oncologists who participated in the research survey, 65.8 percent highly agreed that knowing the gender identity of patients was important and 70.4 percent showed high interest in receiving education regarding the needs of LGBTQ+ patients. However, the survey found that among the same group of respondents, only 38.9 percent felt confident in their knowledge of the health needs of the population, with some limited influence on attitudes and knowledge from LGBTQ+ family and/or friends, political affiliation, years since graduation, oncology specialty, and region of the country.

“From that research, we learned that physicians are not very knowledgeable about the needs of LGBTQ+ patients with cancer,” Chachoua said. “Additional research examined the incidence of cancer in the LGBTQ+ community and found that cancer screening is not a priority for treating patients who are undergoing gender-affirming surgery.”

Combining those two sets of data, the conclusion is obvious: “LGBTQ, and transgender patients especially, are being underserved,” he said. “There is a fair amount of poor recognition of what cancer screening tests are from a physician perspective, and when patients are receiving gender-affirming surgery, they likely are not focused on cancer screening.”

For example, Chachoua noted that a physician treating a male-to-female transgender patient may forget about the prostate, while breast tissue may be forgotten when screening a female-to-male transgender patient. “This made me realize that oncologists are not familiar with or may be uncomfortable treating LGBTQ+ patients, leading to a higher cancer incidence in that population.”

When examining the problem and seeking a solution, Chachoua recalled New York City's history as an epicenter of HIV/AIDS and research for treating patients with the disease. As an important location in the history of the LGBTQ+ community, and the home of the Perlmutter Cancer Center, Chachoua found inspiration. “I began to wonder what part a cancer center could play in the larger goal of providing quality, comprehensive care to the LGBTQ population,” he said.

Bridging the Gap

Chachoua then looked to experienced colleagues and familiar patients to gather support for the initiative, aiming to bridge the gap between physicians and the population in need.

“Our duty as doctors is to serve everyone with the highest quality care, but the LGBTQ population just doesn't get great cancer care,” he said. “We realized that we are not putting forth the effort to care for this underserved, high-risk population.”

Chachoua began by reaching out to a patient of many years whom he previously treated for lung cancer. “I attribute a lot of my inspiration for the initiative to this patient,” he said. “She has been through a lot—and cancer is only one part of her story.”

The patient also underwent female gender-affirming surgery, becoming a force in the community throughout her journey. “Over the years, she taught me a lot about how to create a safe zone, how to create comfort, and how to treat LGBTQ patients appropriately,” he said.

With a vision of the program in his head, Chachoua asked his inspiring patient to be part of a patient and caregiver advisory board. With her involvement and the help of Quinn and other experienced physicians, the program took off. Together, the group looked first from the patient's perspective to learn what one may seek in LGBTQ+ health care. The first and major conclusion? Clinician education.

Looking Forward

Though efforts have been put on hold due to COVID-19, Chachoua and his team have already seen a positive impact on clinicians' awareness of the needs of LGBTQ+ patients, and the desire to be involved in the program is overwhelming.

“With encouragement from the cancer center and enthusiasm among clinicians, we will launch an education program for all faculty and staff,” Chachoua said. “We have lectures lined up for faculty targeting pitfalls and issues LGBTQ patients face, such as simple things like using the correct pronoun. We are helping physicians understand that they can approach pronouns as easily as asking patients how they self-identify,” he said, noting that though those questions are a good first step, and he aims to broaden thinking not just in language, but in larger terms such as adjusting electronic medical records.

Looking forward, Chachoua said the initiative will designate physician champions in each cancer specialty—clinicians who are “very skilled, very interested, and very focused on providing support.” In addition, he plans to use recommendations from the advisory board to work with ancillary services such as radiology and pathology to ensure that they are LGBTQ+ friendly and safe while continuing education initiatives across the center.

“My vision and dream is that the program will not only include ongoing education, but encompass screening, research, and anything in between,” Chachoua said. “We are in a unique position to have science address some of the real issues LGBTQ patients face and learn more about how we can benefit this population.”

Though the program is in its introductory phase, Chachoua has found wide encouragement from his colleagues. “Younger physicians and fellows-in-training especially are very interested in joining the pursuit,” he said, “though by and large, we are supported from the entire physician community.”

For those who may be interested in launching similar initiatives at their own facilities, Chachoua recommended taking time for serious introspection first. “As physicians, we have to look at ourselves and ask, ‘What is my level of comfort, knowledge, and education in treating LGBTQ patients? How can I make my center a safe space?’”

If looking for inspiration, Chachoua recommended simply speaking to other physicians. “I find it very difficult to see groups of people not getting what I see as state-of-the-art care,” he said. “It is inspiring to talk to physicians who are educated and passionate about treating LGBTQ patients—it makes the rest of us want to be the best we can.”

Kelly Wolfgang is a contributing writer.

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