Culturally Competent Care for Sexual and Gender Minority Patients at National Cancer Institute-Designated Comprehensive Cancer Centers

Abstract

Purpose: This study sought to identify the policies and guidelines regarding culturally competent care of sexual and gender minority (SGM) cancer patients and survivors at National Cancer Institute (NCI)-Designated Comprehensive Cancer Centers. Methods: This study used an in-depth interview qualitative approach. Semistructured interviews were conducted via telephone with representatives from 21 of the 45 NCI-Designated Comprehensive Cancer Centers in 2015. Verbatim transcripts were created from the audiotapes for content analysis. Results: Two main themes were identified as follows: (1) patient-focused experiences and support and (2) organization-focused development activities. Most of the cancer centers in this study had an advisory committee to assist with SGM policies and guidelines. Despite the existence of these committees, the majority of centers did not have explicit policies, guidelines, or routine practices addressing the following issues: the collection and integration of sexual orientation and gender identity information in the medical record, gender-neutral language on patient forms, patient educational materials with SGM-specific health concerns, SGM-specific support for cancer survivors, or required SGM-specific cultural competency trainings for medical and nonmedical staff. Conclusion: In general, the cancer centers in this study lacked institutional policies, guidelines, and practices focused on patient-centered cancer care for SGM populations. Coordinated efforts are needed to systemically improve patient-centered cancer care for these populations.

Care delivery, patient experiences, and health outcomes among sexual and gender minority patients with cancer and survivors: A scoping review

“…SOGI is central to individual identity, yet the assumption of heterosexual orientation and biological gender at birth can lead to patients feeling misunderstood, disconnected from their providers, socially isolated, or even stigmatized . When SGM patients disclose SOGI, it may be happening more often to correct assumptions that patients are heterosexual or cisgender (ie, nontransgender) . In addition, failing to assess patient SOGI data can lead to neglect or disregard of a patient's caregiver and/or social support network .…”

“…In addition, failing to assess patient SOGI data can lead to neglect or disregard of a patient's caregiver and/or social support network . Efforts to experiment with the routine collection of SOGI and to further dismantle barriers may lead to patients with cancer and cancer survivors feeling more welcomed and recognized by their providers and to improving the quality of care . This also may lead to more open conversations of importance to individual patients, including patient‐centered discussions about social support networks, sexual functioning, and family planning.…”

“…Area‐based cancer registries, including those that contribute to the National Cancer Institute Surveillance, Epidemiology, and End Results program and the North American Association of Central Cancer Registries, do not abstract SOGI data because these data are not consistently captured in health records nor have data standards for abstraction been developed by registries. Some health care centers have begun to capture SOGI data, but most do not routinely capture SOGI information and lack consistent institutional policies to promote patient‐centered cancer care for SGM individuals, such as using gender‐neutral intake forms and creating patient‐education materials tailored to SGM populations . Collecting these data in cancer registries and electronic health records would facilitate research in this area by expanding recruitment strategies and data linkages, improving the generalizability of the research conducted.…”

“…31,59,60 When SGM patients disclose SOGI, it may be happening more often to correct assumptions that patients are heterosexual or cisgender (ie, nontransgender). 61 In addition, failing to assess patient SOGI data can lead to neglect or disregard of a patient's caregiver and/or social support network. 62 Efforts to experiment with the routine collection of SOGI and to further dismantle barriers may lead to patients with cancer and cancer survivors feeling more welcomed and recognized by their providers and to improving the quality of care.…”

“…62 Efforts to experiment with the routine collection of SOGI and to further dismantle barriers may lead to patients with cancer and cancer survivors feeling more welcomed and recognized by their providers and to improving the quality of care. 61 This also may lead to more open conversations of importance to individual patients, including patient-centered discussions about social support networks, sexual functioning, and family planning. However, recent data (published after the completion of the current review) suggest that oncologists vary greatly in both their attitudes regarding the importance of knowing the SOGI of their patients and confidence in their knowledge of SGM patient health needs.…”