Oral Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2022

Out with cancer: LGBTQI+ cancer survivorship and care (#3)

Jane Ussher 1
  1. Translational Health Research Institute, Western Sydney University, Sydney

There is growing acknowledgement of the psycho-social vulnerability and health disparities experienced by lesbian, gay, bisexual, transgender, queer and/or intersex (LGBTQI) people with cancer. LGBTQI individuals are at higher risk of cancer compared with the general population but are less likely to engage in cancer screening or have a regular healthcare provider. They are invisible in cancer registries, most intake forms and in clinical trials.

LGBTQI patients report high levels of dissatisfaction with cancer healthcare, and difficult interactions with health care professionals (HCPs). This includes HCP heteronormative assumptions or overt HCP hostility and discrimination, leading to patient anxiety associated with disclosure of sexual orientation or gender identity. Absence of LGBTQI-specific cancer information or support serves to render LGBTQI people and their carers invisible. Unique psychosocial challenges are often not acknowledged or addressed, including sexual concerns related to same-gender relationships, the impact of minority stress, absence of support from biological family, and the specific concerns of trans, intersex and younger people. As a result, many LGBTQI patients report anxiety, isolation and frustration throughout their cancer care.  

This paper provides insight into these health disparities and patient-clinician interactions, and outline recommendations for LGBTQI inclusive and culturally competent cancer care, drawing on a mixed-method program of Australian research on LGBTQI cancer survivorship and care. This research includes the perspectives of 554 LGBTQI patients, representing a range of tumor types, sexual and gender identities, and age groups, 153 LGBTQI carers, and 357 oncology HCPs. Rates of distress were 3-6 times higher than the general cancer population, associated with minority stress (discrimination in life and in cancer care, discomfort in being LGBTQI, outness to others), impact on gender and LGBTQI identities, lack of social support, physical concerns and sexual concerns. HCPs reported lack of confidence and knowledge about treating LGBTQI cancer patients, and wanted more education. Lack of LGBTQI knowledge and inclusivity impacted upon patients.

Building oncology HCP communicative competence to work with LGBTQI patients needs to become an essential part of basic training and ongoing professional development. Visible indicators of LGBTQI inclusivity are essential, alongside targeted resources and information for LGBTQI people.

  1. Ussher, J. M., Power, R., Perz, J., Hawkey, A. J., & Allison, K. (2022). LGBTQI Inclusive Cancer Care: A Discourse Analytic Study of Health Care Professional, Patient and Carer Perspectives. Frontiers in Oncology, 12. https://doi.org/10.3389/fonc.2022.832657
  2. Ussher, J. M., Perz, J., Allison, K., Power, R., Hawkey, A., Dowsett, G. W., Hickey, M., Parton, C., McDonald, F. E. J., Davis, I. D., Quinn, G. P., Boydell, K., Robinson, K. H., Chambers, S., & Anazodo, A. (2022). Attitudes, knowledge and practice behaviours of oncology health care professionals towards lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) patients and their carers: A mixed-methods study. Patient Education and Counseling, 105(7), 2512-2523. https://doi.org/10.1016/j.pec.2021.12.008
  3. Ussher, J. M., Perz, J., Rose, D., Dowsett, G. W., Chambers, S., Williams, S., Davis, I., & Latini, D. (2017). Threat of Sexual Disqualification: The Consequences of Erectile Dysfunction and Other Sexual Changes for Gay and Bisexual Men With Prostate Cancer. Archives of Sexual Behavior, 46(7), 2043-2057. https://doi.org/10.1007/s10508-016-0728-0
  4. Power, R., Ussher, J. M., Perz, J., Allison, K., Hawkey, A. J., & Team., T. O. w. C. S. (2022). “Surviving discrimination by pulling together”: LGBTQI cancer patient and carer experiences of minority stress and social support. Frontiers in Oncology, 12, 918016. https://doi.org/10.3389/fonc.2022.918016
  5. Ussher, J. M., Allison, K., Perz, J., Power, R., & The Out with Cancer Study Team. (2022). LGBTQI Cancer Patients’ Quality of Life and Distress: A Comparison by Gender, Sexuality, Age, Cancer Type and geographical remoteness. Frontiers in Oncology, in press.
  6. Ussher, J. M., Perz, J., Kellett, A., Chambers, S., Latini, D., Davis, I. D., Rose, D., Dowsett, G. W., & Williams, S. (2016). Health-Related Quality of Life, Psychological Distress, and Sexual Changes Following Prostate Cancer: A Comparison of Gay and Bisexual Men With Heterosexual Men. The Journal of Sexual Medicine, 13(3), 425-434. https://doi.org/http://dx.doi.org/10.1016/j.jsxm.2015.12.026