Every urologist and oncologist should know about treating sexual and gender minority prostate cancer patients: translating research findings into clinical practice.
In 2016, the NIH designated sexual and gender minorities (SGM) a health disparity population. The next year, the American Society of Clinical Oncology highlighted the need to improve the suboptimal cancer and survivorship care received by SGM populations. There are currently no evidence-based training programs in culturally competent care of prostate cancer patients who are gay, bisexual and/or transgender. In this selective review, we summarize findings from the largest quantitative studies focused on sexual minority prostate cancer survivors and from 65 interviews with NIH staff, clinicians, and cancer clinics in 11 US cities. The report is divided into three parts and uses a question and answer format to address 21 questions relevant to clinicians providing care to SGM prostate cancer patients. First, we identify population-specific issues that are culturally relevant in the care of SGM patients with prostate cancer. While a body of research has emerged on sexual minority prostate cancer patients, the literature on gender minorities is limited to single case reports and inadequate to inform practice. This review covers definitions, population size, cultural and historical context, sexual behavior, population invisibility, sexual orientation and gender identity (SOGI) in the electronic medical record, disparities and evidence of discrimination in treatment provision. The second part focuses on promoting evidence-informed, patient-centered care. This includes current practices in assessing sexual orientation, management of disclosure of sexual orientation, how to address common problems sexual minority men experience post-treatment, common questions sexual minority patients have, management of urinary incontinence, HIV and STI risk during and post-treatment, and sub-groups of sexual minority patients with worse outcomes. It then identifies how male partners differ in prostate cancer support, current research on rehabilitation for sexual minority men, issues in advanced prostate cancer, and things to avoid with minority patients. Finally, we examine the cultural divide between provider and patient, advocating for cultural humility when working with minority patients. Training programs and continuing education can help providers both to become more aware of their own cultural assumptions, informed about health disparities, and able to provide quality care, and to make clinics more welcoming to SGM patients.
Rosser BRS
，Rider GN
，Kapoor A
，Talley KMC
，Haggart R
，Kohli N
，Konety BR
，Mitteldorf D
，Polter EJ
，Ross MW
，West W
，Wheldon C
，Wright M
... -
《-》
Improving Sexual and Gender Minority Cancer Care: Patient and Caregiver Perspectives From a Multi-Methods Pilot Study.
Up to 1 million lesbian, gay, bisexual, and transgender (i.e., sexual and gender minority, SGM) individuals in the United States have histories of cancer. This medically underserved population is diverse, with complex sexualities and gender identities, and distinct health concerns. SGM persons experience disproportionate risks for, and rates of, anal, breast, cervical, colorectal, endometrial, lung, and prostate cancers, in addition to cancers affecting transgender persons who have undergone sex-reassignment. SGM individuals are linked by shared experiences of stigmatization as a minority population for which little cancer research has been conducted. SGM cancer patients frequently report reluctance to seek healthcare, have poorer outcomes following diagnosis, engage in elevated risk behaviors (i.e. smoking and alcohol use) even after cancer diagnosis, have difficulty making emotional adjustment to illness, and experience higher rates of psychological distress. They report less satisfaction with cancer care, deficiencies in patient-centeredness and shared decision-making, gaps in care, and social isolation. Minority stress resulting from experiences of anti-SGM sentiment and discrimination affects cancer patients and their informal cancer caregivers. Our paper presents findings from a pilot study to identify gaps and opportunities to improve cancer care for SGM patients and caregivers at the University of New Mexico Comprehensive Cancer Center.
Between June 2020 and July 2021, we used a multi-methods research design informed by ecological theory to collect qualitative and quantitative data regarding cancer patient and caregiver quality of life (QoL) and experiences of cancer and survivorship care. We used PROMIS measures distributed via REDCap to assess QoL (i.e., fatigue, pain interference, pain intensity, anxiety, depression, emotional support, social isolation, and companionship), and conducted in-depth semi-structured interviews. We recruited 10 SGM cancer patients and 8 heterosexual, cisgender (H/C) patient matches, and their self-identified informal cancer caregivers (n=36, dyad total n=18). Interviews ranged from 1 to 2 hours, were audio-recorded and transcribed for analysis. The study was approved by the University of New Mexico Human Research Protections Office Institutional Review Board.
Results of the PROMIS QoL assessments indicated that SGM patients reported greater anxiety [mean (SD) = 54.5 (8.8)] and depression [mean (SD) = 49.3 (4.8)] than H/C patients [mean (SD)=51.6 (7.5) and 45.4 (6.8) respectively], while heterosexual, cisgender (H/C) patients reported higher fatigue [mean (SD) =52.04 (8.18)] and stronger pain intensity than SGM patients [mean (SD)=48.3 (9.1) and 37.8 (9.1) respectively]. SGM patients reported higher levels of social isolation [mean (SD) = 48.3 (7.3) vs. 42.1 (7.4) for H/C patients, whereas H/C patients reported more emotional support (mean (SD) =57.5 (9.3) vs. 53.0 (6.9)] and companionship [mean (SD) = 55.2 (8.6) vs. 51.5 (11.0)]. SGM and H/C differences in caregiver QoL were most notable with regards to higher levels of fatigue [mean (SD) = 47.1 (6.0) for SGM, and 42.4 (11.5) for H/C] and companionship [mean (SD) = 55.3 (6.0) for SGM, and 50.9 (5.5) for H/C]. Qualitative interviews supported our quantitative results. SGM patients and caregivers articulated experiences of anti-SGM stigma and discrimination contributing to minority stress that influenced their initial cancer care encounters. SGM dyads had more trepidation and/or medical mistrust during initial cancer care encounters when compared to H/C patients and caregivers. SGM patients questioned care that was not culturally responsive to SGM preferences, while H/C patients were more apt to identify gaps in communication and perceived lack of clarity regarding cancer care delivery. Although SGM patients experienced high satisfaction with their cancer care once they developed trust with their providers, they discussed desires to have more direct conversations with their oncologists about their sexual orientation and gender identities and sexual health. All patients and providers in the study (SGM and H/C) appreciated their oncology care teams. All patients and caregivers relied on social networks comprised of friends and family, although SGM patients and caregivers had smaller social networks and relied less on biological family, and single SGM individuals experienced challenges accessing cancer care and struggled with social isolation. We discovered too, that all caregivers, regardless of Sexual Orientation and Gender Identity (SOGI), perceived a lack of support and information pertaining to their loved one's treatment, side effects and best way to provide care.
This study demonstrates that prior stigmatizing experiences contribute to minority stress and medical mistrust for SGM cancer patients and their informal caregivers across the cancer care experience. Findings point to specific gaps in SGM cancer patient care, including lack of conversation about patient SOGI, inadequate staff and oncology provider SGM specific knowledge and cultural competence/cultural humility training, and insufficient patient supports for those who lack social support during cancer care treatment. Further, this study reveals inadequacies in SGM specific support, and overall support services for informal cancer caregivers. Additional research is required to develop targeted interventions to address minority stress and clinic environment concerns to improve cancer care for SGM patients. Importantly, while there were differences between SGM and H/C experiences of cancer treatment, significant similarities also emerged. Caregiver expressed consensus about the current lack of support and guidance for informal caregivers of cancer patients. Future work should focus on providing caregiver-specific resources in the clinic setting and facilitating support groups for caregivers to network with one another, as well as for tailoring SGM specific caregiver support services. Our findings highlight areas for improving cancer care for the SGM community, as well as a broader population of patients and caregivers.
Kano M
，Jaffe SA
，Rieder S
，Kosich M
，Guest DD
，Burgess E
，Hurwitz A
，Pankratz VS
，Rutledge TL
，Dayao Z
，Myaskovsky L
... -
《Frontiers in Oncology》
ResearchGate
(全网免费下载)
钛学术
(全网免费下载)
