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Knowing Gender Identity and Sexual Orientation of Patients Is a Vital Aspect of Medical Care


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A survey of oncologists from National Cancer Institute (NCI)-designated Comprehensive Cancer Centers found that 95.3% of oncologists who responded are comfortable with treating lesbian, gay, and bisexual patients with cancer, and 82.5% are comfortable treating transgender patients with cancer.1 Just under 40% of those surveyed consider it important to know the sexual orientation of patients, in contrast to 66% who consider it important to know the gender identity of patients. Most of the oncologists surveyed, however, reported that institutional practice intake forms do not include questions about a patient’s sexual orientation, sex at birth, or gender identity.

“An inclusive and inviting clinical environment that enables providers to capture [sexual orientation and gender identity] information is vital to providing patient-centered care,” according to the report on the survey results, published in the Journal of Clinical Oncology.1 “Moreover, the National Institutes of Health and the Institute of Medicine recognize [sexual orientation and gender identity] information as a vital aspect of medical care and health research and recommend collection of this information.”

Since this information is considered important to patient care, how should oncologists get it?

“The best way to ask deeply personal information is not person-to-person, but as a part of screening on automated touchscreen machines,” Matthew J. Loscalzo, LCSW, said in an interview with The ASCO Post. Prof. Loscalzo is Executive Director, Department of Supportive Care Medicine, and Liliane Elkins Professor in Supportive Care, City of Hope, Duarte, California.

‘Technology Humanizes the Experience’

“This is one of those areas where technology, paradoxically, humanizes the experience,” Prof. Loscalzo said. Patients are already using touchscreen automated systems to answer personal questions about their level of understanding of their diagnosis and treatment options, and their willingness and ability to undergo treatment. “I think we drop the ball when we don’t create an environment that normalizes these questions about sex and gender and asks them as part of other basic demographics.”


We are already using technology in health care. We should be using technology to humanize the health-care experience.
— Matthew J. Loscalzo, LCSW

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Prof. Loscalzo noted that nearly 45,000 patients at City of Hope have used touchscreens to enter personal data. “We ask about prognosis, money, sex, violence in the home, substance abuse, death, hospice, end of life—all the hot topics,” he said. “At the end of the questionnaire, there is a question that says, ‘Did you find any of these questions emotionally upsetting?’ and 93% of patients say ‘no’; 7% say ‘yes.’ It is open-ended, so they can write in anything. The scariest things for them are chemotherapy, money, and end of life,” he said. Patients don’t report the questions about prognosis, drugs, or sex as being emotionally upsetting.

In addition to asking patients what sex they were assigned at birth, their current gender identity, and sexual orientation, touchscreen systems should be used to ask patients “How do you want to be addressed; what pronoun should we use? These are the basics,” Prof. Loscalzo said. “What is your name and how do you want to be addressed is really the minimum of respect we should give any human being.”

During the past decade, health-care facilities have spent many millions of dollars to automate information systems, but “much of the money went into billing,” Prof. Loscalzo noted. “Very little of it went into quality of life, looking at patients and families. We are already using technology in health care. We should be using technology to humanize the health-care -experience.”

Measured Attitudes, Knowledge, Practices

The survey findings were based on a random sampling of 450 oncologists from 45 NCI-designated Comprehensive Cancer Centers. A paper survey with an optional link for a Web-based version was mailed in January 2016 and measured attitudes and knowledge about lesbian, gay, bisexual, transgender, queer/questioning (LGBTQ) health and institutional practices.

Among the 149 oncologists participating in the survey (33.1% response rate), the mean age was 47.2 years. “The majority of respondents identified as male (68.5%), white (63.8%), non-Hispanic (87.3%), and heterosexual (90.6%),” the authors reported. None of the participants identified as transgender.

Comfortable, but Not So Confident

While 95.3% reported they were comfortable treating LGB patients, “only 53.1% reported they were confident in their knowledge of the health needs of LGB patients,” the researchers reported, and that percentage decreased to 38.9% postsurvey. “By comparison, the percentage of oncologists comfortable treating transgender patients dropped to 82.5%, and only 36.9% reported they were confident in their knowledge of the health needs of transgender patients,” and that percentage decreased to 19.5% postsurvey.

“This observed decrease suggests a developed awareness of lack of knowledge, and subsequent decreased confidence, perhaps attributed to exposure to survey items related to practice intake forms inquiring about [sexual orientation and gender identity] information or the high number of ‘do not know or prefer not to answer’ responses to knowledge items,” the authors wrote.

Oncologists Want to Know More

More than 70% of the oncologists surveyed expressed an interest “in receiving education regarding the unique health needs of LGBTQ patients,” the survey found, and 43.7% believed there should be mandatory education about LGBTQ health needs in their workplaces. Stratified analyses showed that “having LGBTQ friends or family was associated with greater comfort with LGB individuals and interest in education on LGBTQ health needs.”

Knowing the gender identity and sexual orientation of patients could lead to more focused attention on cancer risk factors and early detection. As noted in the survey report, “the LGBTQ population is less likely to engage in early detection and cancer screening and often engages in behaviors associated with increased cancer risk.” These behaviors include elevated rates of smoking, alcohol use, and sun exposure.

Close to 70% of the oncologists surveyed, however, reported that they were “neutral” or “do not know or prefer not to answer” questions about whether LGBTQ individuals were more likely to smoke or “engage in more sun-seeking behaviors.”

Gap in Guidelines

“Because cancer disparity in the LGBTQ community is a largely ignored public health issue, there is a gap in LGBTQ-specific evidence-based clinical practice guidelines and best practice behaviors across the cancer care continuum from prevention to survivorship,” the study authors pointed out. In addition, deficiencies in collecting sexual orientation and gender identity information mean less accurate statistics to track disparities and identify unmet needs of this population.

The science to know how to treat unique health issues of LGB and particularly transgender individuals with cancer “is not there yet,” Prof. Loscalzo said. An essential step in getting there, he added, is “just to have the confidence” to raise these issues.


We should not expect people who identify as LGBTQ to train us about what their health-care needs are.
— Gwendolyn P. Quinn, PhD

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In a CBS News report on the study,2 the senior author, Gwendolyn P. Quinn, PhD (lead author is Matthew Schabath, PhD), was quoted as saying, “We should not expect people who identify as LGBTQ to train us about what their health-care needs are. It is our obligation as institutions and providers of care to figure out how we can best serve them.” She also noted that to provide better care for LGBTQ patients, “There need to be policies at the institutional level, from nurses to intake to schedulers; all workers need to have this cultural competency in order for patients to have a good experience.”

Data from the current study and a previous pilot study “provide crucial evidence to develop both culturally sensitive and clinically knowledgeable curriculum and guidelines addressing cancer disparities in LGBTQ patients across the cancer care continuum,” the researchers wrote. In addition, “the results from this study can be leveraged toward future research to develop LGBTQ-centric training and resources for the development of evidence-based competency curriculum to prepare and train the oncology workforce for cancer disparities in the LGBTQ community.” 

DISCLOSURE: Prof. Loscalzo reported no conflicts of interest. Dr. Quinn had received institutional research funding from Boehringer Ingelheim at the time of her employment with Moffitt Cancer Center.

REFERENCES

1. Schabath MB, Blackburn CA, Sutter ME, et al: National survey of oncologists at National Cancer Institute–designated Comprehensive Cancer Centers: Attitudes, knowledge, and practice behaviors about LGBTQ patients with cancer. J Clin Oncol 37:547-558, 2019.

2. Welch A: Most cancer doctors don’t know enough about LGBTQ patient care, study finds. CBS News, January 16, 2019. Available at www.cbsnews.com/news/cancer-doctors-oncologists-lgbtq-transgender-patient-care-survey. Accessed March 6, 2019.


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