‘Visibility matters’ when establishing LGBTI-friendly practice for younger patients with cancer
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It was at the height of Australia’s marriage equality debate in 2017 when Kate Thompson, MSW, approached her colleague — social worker Mairghread Clarke, BSW — with some issues that had been raised by younger patients at Peter MacCallum Cancer Centre.
Several of these patients had spoken independently with Thompson — program manager of ONTrac at Peter Mac Victorian Adolescent & Young Adult Cancer Service, which ensures all aspects of a young person’s well-being and health are addressed — about barriers to care facing lesbian, gay, bisexual, transgender or intersex (LGBTI) individuals who utilized the service.
“They described a lack of visibility and ‘welcoming in’ with regard to the physical space of the youth cancer center, as well as an absence of resources directed to the LGBTI [adolescent and young adult] cancer community,” Clarke told HemOnc Today.
Thompson proposed that Clarke lead a review of the service, which included a review of available literature on barriers to care facing LGBTI adolescents and young adults (AYAs) with cancer.
“It became quickly apparent that while there were documented barriers to care for LGBTI young people accessing health services in general, and barriers to care for LGBTI adults with cancer, there was a scarcity of information at the intersection of AYA, cancer and LGBTI,” Clarke said.
The research group developed the systematic review under the direction of Jeremy Lewin, MBBS, FRACP, medical director of ONTrac at Peter Mac Victorian Adolescent & Young Adult Service and medical oncologist at Peter MacCallum Cancer Centre.
Their search for relevant studies examining barriers to care among LGBTI AYAs with cancer yielded just one study for analysis.
Clarke’s team revisited the search strategy to ensure the parameters were not too narrow. She said they “deliberately took an overinclusive approach so as to maximize study return” but, after consulting with other colleagues in the field, the results spoke for themselves.
“Although the scarcity of eligible studies prohibited any meaningful analysis, this systematic review nonetheless demonstrated a clear gap in the understanding of cancer in LGBTI AYAs,” Clarke and colleagues wrote in their analysis, published in June in Journal of Adolescent and Young Adult Oncology. “This is difcult to reconcile with the knowledge that the AYA years are a crucial timepoint for formation of sexual and gender identities.”
Clarke said that LGBTI youth face well-documented health care disparities that include difficulty in engaging with health services, in addition to the systemic and cultural barriers to care that have been reported among LGBTI adults with cancer.
“There is a gap — a significant one — in the existing knowledge regarding sexual and/or gender diverse young people with cancer,” she said. “This gap places the medical care and psychosocial well-being of LGBTI young people with cancer at risk.”
‘Blueprint for change’
With quantifiable evidence of the problem, Clarke and her colleagues at Peter Mac set about establishing a blueprint by which health care professionals could become more welcoming to their younger LGBTI patients with cancer.
This “blueprint for change” included:
- comprehensive and ongoing training of health care providers on health care disparities facing LGBTI AYAs, including training on current trends and social landscapes;
- implementation of LGBTI-inclusive practice principles in the health care setting;
- initiation of a multipronged research strategy to construct an evidence base for LGBTI AYA patients with cancer;
- establishment of “safe places” in hospitals for LGBTI AYAs; and
- development of partnerships with LGBTI community stakeholders to establish appropriate referral pathways and overcome biases.
“Visibility matters. Ensure your workplace, clinic room or hospital ward has imagery that signposts safety and welcoming to young people,” Clarke said. These messages can be “as simple as a rainbow flag on a desk, visible information on local LGBTI support organizations in the waiting room, or a statement on your webpage or email signature,” she added.
Clarke also recommended that clinicians not assume a younger patient’s sexual orientation or gender identity, but instead ask them questions about it and be prepared for their answer, being mindful of privacy and confidentiality procedures. If the patient’s response presents an unfamiliar situation, the clinician should “acknowledge any information deficits and inform yourself appropriately,” Clarke said.
Freely available tools online can be used to implement LGBTI-inclusive practice standards. Clarke and colleagues mentioned the Rainbow Tick framework used in Australia, which is administered by the nonprofit Quality Innovation Performance. The organization’s website provides a free version of the latest standards and an audit tool to assess an organization’s performance against the standards.
Early instruction
Nelson Sanchez, MD, performs his clinical work as an attending physician at Memorial Sloan Kettering Cancer Center, but he also explores avenues of innovation in medical school training. He’s been attacking the problem at its source, so to speak, by instructing medical school students about LGBTI health care since 2008.
Sanchez was not surprised by the scarcity of studies relevant to LGBTI youth with cancer and does not think it’s because of any particular lack of interest in these patients as a study group. However, this lack of research trickles down into the overall education that health trainees and professionals receive, which often is devoid of LGBTI-related health care issues.
“When it comes to practitioners’ training — whether it be doctors, nurses, nurse practitioners or ancillary support staff — there is very limited education that’s specific to LGBTI terminologies and how to communicate appropriately with these patients,” he told HemOnc Today.
Sanchez teaches medical students LGBTI-inclusive communication skills at Weill Cornell Medicine, where he is an associate professor of medicine.
“We have the students practice taking a sexual history, discussing sexual identity with patients and appropriate counselling going forward, for example, what they advise for the patients’ health maintenance or disease screening,” Sanchez said.
Regardless of the increasing acceptance of LGBTI individuals and their culture, there are still communication deficiencies between physicians and their LGBTI patients, he asserted.
The day he spoke with HemOnc Today, Sanchez gave a lecture to his students about how to improve communication between themselves and LGBTI patients.
“They are still nervous about it,” he said. “They are medical students, so they are nervous about everything.”
Both patients and clinicians can be uncomfortable discussing the aspects of sexuality and gender identity with each other, Sanchez said.
“I get them comfortable with using the words and language of LGBTI culture because, if they never practice it, then they will never be comfortable with it,” he said.
Clinicians who want more information on LGBTI issues and LGBTI pediatric cancer care should be aware of resources available, online and elsewhere, that they can consult if a patient presents a situation that their formative training failed to address.
He closed his lecture with the case of a physician treating his or her first transgender patient.
“Now that the clinician has learned that a patient is transgender, what do they do with that information?” he asked rhetorically.
Physicians need to remember the appropriate steps to administer a physical exam to a transgender patient, the appropriate cancer screening tests to order, and to ask for the stage of the patient’s transition, as different cancer screenings may be required for patients who are post-gender affirmation surgery because of their new anatomy.
“Clinicians need this education and if they don’t receive it, they won’t know the answers to these questions,” Sanchez concluded. – by Drew Amorosi
Online resources
Rainbow Tick Standard : www.qip.com.au/standards/rainbow-tick-standards
Rainbow Tick Standard Audit Tool : www.rainbowhealthvic.org.au/research-resources
Peter Mac: Being OK...Being You: www.petermac.org/beingokbeingyou
LGBT Health Workforce Conference : bngap.org/lgbthwfconf
American Academy of Pediatrics LGBT Pediatric Care Resources :
www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/Pages/LGBT-Resources.aspx
World Professional Association for Transgender Health : www.wpath.org
UCSF Center of Excellence for Transgender Health : prevention.ucsf.edu/transhealth
Reference:
Clarke M, et al. J Adolesc Young Adult Oncol. 2019;doi:10.1089/jayao.2019.0021.
For more information:
Mairghread Clarke, BSW, can be reached at mairghread.clarke@petermac.org.
Nelson Sanchez, MD, can be reached at Memorial Sloan Kettering Cancer Center, 1275 York Ave., New York, NY 10065; email: sanchezn@mskcc.org.
Disclosures: Clarke and Sanchez report no relevant financial disclosures.