Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2023

Answering the common questions: LGBTQI+ People and Cancer, a world-first information resource (#446)

Jenni Bruce 1 , Jenny Mothoneos 1 , Ruth Sheard 1 , Jane Ussher 2 , Rosalie Power 2 , Janette Perz 2
  1. Cancer Council NSW, Woolloomooloo, NSW, Australia
  2. Translational Health Research Institute, School of Medicine, Western Sydney University, Sydney, NSW, Australia

Background

LGBTQI+ people face a disproportionate cancer burden, with high rates of distress and unmet needs including invisibility in cancer information and care.1-3 An audit of Australian cancer websites found the vast majority (87%) did not mention LGBTQI+ people and few resources were tailored for LGBTQI+ people.4

 

Aims

Evidence shows that access to reliable, easy-to-read information after a cancer diagnosis can reduce distress, help with treatment decisions and managing side effects, and facilitate conversations with health professionals.5-8 As a partner in the Out with Cancer Study Team, Cancer Council NSW produced a tailored information booklet as a translational outcome of the research. The aim of the booklet was to fill the information gap, answer the common questions that LGBTQI+ people have after a cancer diagnosis, and improve the cancer experience of LGBTQI+ people.

 

Method

Working closely with the Out with Cancer Study Team, Cancer Council NSW prepared an evidence-based draft to address unique experiences and concerns identified in the research. The draft was reviewed by over 30 expert stakeholders, including researchers, health professionals, LGBTQI+ organisations, and LGBTQI+ people with a cancer experience.

The draft was then extensively revised and expanded to 80 pages. Topics covered include coping with cancer when you are LGBTQI+, disclosure to health professionals, dealing with discrimination, body image and gender, sexual intimacy, fertility, survivorship issues, and advanced cancer, with chapters for ​trans and/or gender-diverse people, intersex people, and carers.

 

Results

Launched in February 2023 with a national print run of 5000 copies, LGBTQI+ People and Cancer9 is a world-first resource. The booklet has been distributed to cancer treatment centres and to individuals on request. It is also available on the Cancer Council NSW website, with 10,959 page visits in the first four months.

 

Conclusion

The resource will be reviewed on a regular 3-year cycle. An evaluation is planned and will inform the next edition.

 

  1. Ussher, JM.,* Allison, K.,*, Perz, J., Power. R., & The Out with Cancer Study Team. LGBTQI Cancer Patients’ Quality of Life and Distress: A Comparison by Gender, Sexuality, Age and Cancer Type and Geographical Remoteness. Frontiers in Oncology (2022) 12:873642. *Joint first authorship.
  2. Griggs J, Maingi S, Blinder V, Denduluri N, Khorana AA, Norton L, et al. American Society of Clinical Oncology position statement: Strategies for reducing cancer health disparities among sexual and gender minority populations. J Clin Oncol (2017) 35(19):2203–8. doi: 10.1200/JCO.2016.72.0441
  3. Lisy K, Peters MDJ, Schofield P, Jefford M. Experiences and unmet needs of lesbian, gay, and bisexual people with cancer care: A systematic review and meta-synthesis. Psycho-oncol (2018) 27(6):1480–9. doi: 10.1002/pon.4674
  4. Ussher, JM., Ryan, S., Power, R., Perz, J. & The Out with Cancer Study Team. Almost Invisible: A Review of Inclusion of LGBTQI People with Cancer in Online Patient Information Resources. Patient Education and Counseling (2023) 114. 107846. 10.1016/j.pec.2023.107846.
  5. Arora, N.K., et al., Barriers to information access, perceived health competence, and psychosocial health outcomes: test of a mediation model in a breast cancer sample. Patient Educ Couns (2002) 47(1): p. 37-46.
  6. Tran, Y., et al., What information do patients want across their cancer journeys? A network analysis of cancer patients' information needs. Cancer Med (2019) 8(1): p. 155-164.
  7. Husson, O., Mols, F. l.v. Van de Poll-Franse. The relation between information provision and health related quality of life, anxiety and depression among cancer survivors: a systematic review. Annals of Oncology. (2011) 22, DOI 10.1093/annonc/mdq413
  8. Knobf M, T. Being prepared: Essential to self-care and quality of life for the person with cancer. Clinical Journal of Oncology Nursing (2013) 17, 255-261. DOI 10.1188/13.CJON.255-261
  9. Cancer Council NSW. LGBTQI+ People and Cancer: A guide for people with cancer, their families and friends. (2023) cancercouncil.com.au/lgbtqi