Background

The lesbian, gay, bisexual, transgender, queer/questioning (LGBTQ) population, also known as sexual and gender minorities (SGMs), has a higher risk for multiple types of cancers compared with heterosexual and cisgender populations, which is in part attributed to an elevated prevalence of risk behaviors and factors among SGM individuals.¹ For example, higher rates of human papillomavirus (HPV) in the SGM population contribute to an increased incidence of anal cancer among men who have sex with men (MSM) compared with heterosexual men,² and higher rates of cervical cancer risk factors and behaviors in lesbian women compared with heterosexual women.³ There is speculation that higher smoking rates in the SGM community may lead to an elevated risk of tobacco-related diseases, such as lung cancer, although there are not yet sufficient data on rates of lung cancer among SGMs.⁴ Collection of sexual orientation and gender identity (SOGI) data is currently not standard, and these data are not included in SEER or other national data sets. Thus, SGM populations have not been followed over time to determine the rates of emergence of new cancer cases, and therefore these and other areas need immediate and careful monitoring. SGMs are less likely to seek cancer screening⁵; face multiple structural, cognitive, and social barriers that decrease the likelihood of screening^5–7; and are more likely to be economically disadvantaged and underinsured, to underutilize healthcare⁸; and to have poorer cancer-related outcomes.¹

Despite the impact cancer has on the SGM population, a previous study found that most surveyed oncologists lacked knowledge regarding SGM health-related issues and did not inquire about patients' SOGI.⁹ The NCCN multidisciplinary expert panels lead the nation in establishing clinical practice guidelines addressing cancer prevention, early detection, and treatment of cancer sites and populations.¹⁰ Given the emerging body of research identifying cancer disparities in the SGM population, we conducted a national survey of the NCCN Guidelines panels to assess whether medical and psychosocial issues unique to SGM populations are addressed or will be addressed in the future.

Methods

Study approval was obtained from Chesapeake Institutional Review Board (Columbia, MD) and a Waiver of Documentation of Consent was granted. We contacted a panel member from each of the NCCN panels (n=50), and they were e-mailed an invitation to participate in the study. Surveys were administered from February through June 2016. A link embedded within the e-mail routed participants to a short Web-based survey (Figure 1) that assessed each panel's current practices and/or future plans for addressing medical and psychological issues relevant to LGBTQ individuals, including the relevance of patients' SOGI to the focus of the guideline (Table 1). Published guidelines for all 50 panels were independently reviewed by 2 members of the research staff to assess the presence of any content specific to

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NCCN Panel Member survey.

Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 15, 11; 10.6004/jnccn.2017.0169

Results

Of the 31 responses, 87% of NCCN panel members self-reported sexual orientation was not relevant to the focus of their guidelines and 90% reported gender identity was not relevant. Nine panel members reported that their guidelines did address LGBTQ medical or psychosocial issues. Conversely, 87% of NCCN panel members responded that their guidelines currently did not address LGBTQ medical or psychosocial issues, with no plans to do so in the future; 10% of panel members noted that although their respective panels did not presently address LGBTQ medical and psychosocial issues, they planned to do so in the future. A review of each responding

Table 1.

Aggregate Results of NCCN Guideline Panels

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Discussion/Implications

Results from our survey demonstrate that integration of SGM-specific issues has not yet reached NCCN panels, perhaps because SGM cancer research is still emerging. Although the majority of respondents indicated that their panels did not address LGBTQ medical and psychosocial issues, with no plans to address them in the future, there were promising exceptions. Similarly, several panel members acknowledged the importance of SOGI to the focus of their panels. These data represent an auspicious start to the creation of policy addressing the unique needs of SGMs across the cancer continuum.

Direct applicability of SGM-related issues may be more readily apparent to panel members depending on the specialty, especially for panels associated with cancer sites for which evidence-based research has demonstrated an SGM-related disparity. For example, the NCCN Guidelines for Anal Carcinoma addresses the higher incidence of anal cancer among MSM and reiterates the Advisory Committee on Immunization Practices' recommendation for HPV vaccination in this population.¹⁰

It can be argued, however, that consideration of SGM issues has relevance across all NCCN panels and represents best practice in patient care. Indeed, knowledge of patients' SOGI is a relevant factor when identifying risk factors for effective cancer primary, secondary, and tertiary prevention. SGM individuals face unique challenges throughout the course of the cancer care continuum, particularly related to sexual functioning, social support, and access to healthcare. Providers should not assume heteronormativity when interacting with patients; they should actively cultivate an environment that encourages disclosure of SOGI and recognize that SGMs have unique medical needs.^11–13 Consideration of the unique medical and psychosocial needs of SGM populations should be routinely integrated into clinical practice guidelines in the oncology care setting. Establishing standardized guidelines to improve providers' knowledge about cancer risk in the SGM population will likely improve quality of care for SGM individuals.

Review of the clinical practice guidelines for all responding panels revealed that only the NCCN Guidelines for Anal Carcinoma contained language specifically addressing the unique needs of the SGM population. The NCCN Guidelines for Distress Management and Survivorship did contain vague references to sexuality that were not referenced in the context of SGM-related health. Further research is needed to understand how panels reporting consideration of SGM health-related issues interpret this, because it was not apparent from their guidelines that SGM issues were addressed. Nonresponses from key NCCN panels is a limitation in this study, particularly among panels representing sites with cancer disparities in SGM populations, including prostate and head and neck cancers.

Conclusions

The results from our national survey demonstrated that NCCN Guidelines Panels are not addressing an emerging, underserved population. The landscape of SGM health is evolving as research and medical fields reveal the unique health needs and disparities

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Recommended data collection of sexual orientation and gender identity in electronic medical records.

Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 15, 11; 10.6004/jnccn.2017.0169