Although lesbian, gay, bisexual, transgender, and questioning (LGBTQ) patients have unique health care needs, half of oncologists are not confident in their knowledge of those needs, according to a new study recently published in the Journal of Clinical Oncology (2019; doi:10.1200/JCO.18.00551). But the majority of doctors are eager to learn.
“As EMRs are now required to hold a place for the collection of sexual orientation and gender identity data, clinicians need training on what to do with this information,” stated study author Gwendolyn Quinn, PhD, Professor in the Department of Population Health at NYU Langone Health. “If patients are disclosing this important information about who they are, it should not just be for record keeping. People in medical school are likely getting this training now, but not specific to oncology. People who trained several years ago are not likely to have received any training about the supportive care needs of the sexual and gender minority (SGM) community or how to create safe and inclusive spaces in their practices.”
Knowledge Gaps Revealed
Researchers from the Moffitt Cancer Center and NYU School of Medicine surveyed 450 oncologists from 45 NCI-designated cancer centers nationwide to gain a better understanding of the providers' knowledge of, attitudes toward, and willingness to be educated about LGBTQ cancer patients.
The survey included 12 items regarding practitioner attitude, six about specific LGBTQ knowledge, three regarding institutional practices, 18 on demographics, and two post-survey confidence questions that asked about the providers' knowledge of LGB and transgender health. The survey also included three open-ended questions about personal experiences treating LGBTQ patients, reservations about treating this population, and suggestions for improving patient care.
Of the 33 percent who responded, 95.3 percent said they were comfortable caring for lesbian, gay, and bisexual patients, but only 82.5 percent were comfortable treating transgender patients and only 36.9 percent were confident in their knowledge of transgender health needs.
Perhaps more interesting was the drop in practitioner confidence by the end of the survey. While 53.1 percent said they were confident they knew the health needs of LGBTQ patients at the beginning of the survey, only 38.9 percent were as confident when asked again at the end of the survey. And the percentage of respondents who were confident in their knowledge of transgender health needs fell to just 19.5 percent.
The researchers speculate that the survey itself helped practitioners identify their own knowledge gaps, especially considering many specific knowledge questions had high percentages of “neutral” and “do not know or prefer not to answer” responses. For example, when asked if screening gay and bisexual men for anal cancer can increase their life expectancy, 47.7 percent chose “neutral” or “do not know or prefer not to answer.” Despite studies showing an increased prevalence of smoking within the LGBTQ community compared with the general population, 40.9 percent of oncologists surveyed chose “do not know or prefer not to answer” when asked about it.
But the lack of knowledge is not for a lack of interest. The survey found 70.4 percent expressed interest in more education on the health needs of the LGBTQ community. And those who said they know someone within the LGBTQ community were more likely to say they were comfortable treating LGBTQ patients, the survey found.
As much as 12 percent of the U.S. adult population identify as LGBTQ, and each group within this growing population has distinct health considerations, including increased prevalence of cancer risk factors. Early data suggests lesbian and bisexual women may be at increased risk of breast and cervical cancer due to the increase prevalence of cancer risk factors such as nulliparity, alcohol use, smoking, and obesity within the population (CA Cancer J Clin 2017; doi:10.3322/caac.21288).
“There are higher rates of substance use and abuse, smoking, and obesity as well as mental health issues in the LGBTQ population, which is likely due to stress and stigma,” Quinn noted. In addition, “low rates of cancer screening or the use of preventive health care, likely due to misinformation and fear of or prior negative experience with disclosing SGM status to a provider,” only adds to the list of behaviors that puts this population at an increased risk of cancer, she explained.
Previous research shows approximately 30 percent of LGBTQ adults do not use health care services or do not have a regular doctor, and LGBTQ patients may avoid seeking care due to cost barriers, fear of stigmatization, and lack of provider knowledge—all of which lead to general concerns of substandard care or confidentiality breaches (CA Cancer J Clin 2017; doi:10.3322/caac.21288).
In one survey of 273 LGBTQ cancer patients, respondents reported challenges accessing competent care, including variable care based on the providers' LGBTQ-specific knowledge, skills, and assumptions (Support Care Cancer 2018; doi:10.1007/s00520-018-4535-0).
While a patient's medical care doesn't change based on their sexual orientation, their supportive care needs might. “SGMs are more likely to have a ‘family of choice’ and they may have different supportive care needs in the cancer setting than heterosexual/cisgender patients,” Quinn explained. “Some lesbian women are not interested in breast reconstruction and resent being told to listen to it; some gay men with prostate cancer may choose a treatment that allows them to maintain sexual function over longevity.”
Significant research is needed to better understand the complex practitioner/LGBTQ patient relationship, but most of what is currently available draws attention to the need for better practitioner education.
Armed with the knowledge that the majority of oncologists are eager for more education regarding the health needs of the LGBTQ community, the researchers designed an online cultural competency training program. The curriculum for oncologists on LGBTQ populations to optimize relevance and skills (COLORS) training program includes two sections on general topics, such as sexual orientation and gender identity, and two sections specific to oncology, including fertility and hormone therapy.
In a pilot study, 20 oncologists completed the training and revealed the program boosted practitioner knowledge considerably. Before the program, only 33 percent of oncologists could answer at least 90 percent of the knowledge items correctly. After the COLORS program, 81 percent could. In addition, nearly all of the study participants said they would recommend the training to other oncologists.
Quinn and her team will continue their work on online training specific to oncology, but she says clinicians can find general tools to get started through the National LGBT Cancer Network's cultural competency training, the National LGBT Health Education Center, and SAGECare's cultural competency resources.
The dearth of information on health disparities within the LGBTQ community has led to a lack of LGBTQ-specific clinical practice guidelines within the cancer care community—leaving these patients vulnerable to substandard care. But knowing what you don't know is a crucial first step to correcting the problem.
Rebecca Hepp is a contributing writer.
LGBTQ Awareness Resources
- National LGBT Cancer Network's cultural competency training https://cancer-network.org/programs/cultural-competency-training
- National LGBT Health Education Center http://www.lgbthealtheducation.org
- SAGECare's cultural competency resources http://www.sageusa.org/what-we-do/sagecare