Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2024

Endometrial cancer patient experiences: mapping information needs, satisfaction and preferred sources (#523)

Tracey DiSipio 1 2 , Britta Wigginton 1 , Susan Jordan 1 , Joan Cunningham 3 , Bena Brown 4 , Abbey Diaz 5
  1. The University of Queensland, Herston, QUEENSLAND, Australia
  2. Australia New Zealand Gynaecological Oncology Group, Camperdown, New South Wales, Australia
  3. Menzies School of Health Research, Charles Darwin University, Hawthorn, Victoria, Australia
  4. Southern Queensland Centre for Excellence in Aboriginal and Torres Strait Islander Primary Healthcare, Metro South Health, Inala, Queensland, Australia
  5. National Centre for Epidemiology and Population Health, Australian National University, Canberra, Australian Capital Territory, Australia

Background: Endometrial cancer is the fifth most diagnosed cancer in Australian women and incidence is increasing.1 Patient information is essential for optimal cancer care across the cancer continuum. Meeting information needs has significant benefits to cancer patients’ wellbeing.2-4 This research was guided by the objectives of the ANZGOG EDEN Initiative.

Aim: To map information needs, satisfaction and preferred sources for endometrial cancer survivors at three touchpoints: (1) pre-diagnosis, before first seeing a doctor; (2) diagnosis, during the diagnostic process; (3) treatment, during the time of planning and receiving cancer treatment.

Methods: Women aged 18+ years, diagnosed with primary endometrial cancer in 2022-2023 were identified through the Queensland Cancer Registry. We conducted a cross-sectional mixed methods study including a mailed self-administered questionnaire (information needs, satisfaction, sources) and semi-structured telephone interviews (using journey mapping to more fully understand patient experiences).

Results: Eighty-two women (32% response) completed a questionnaire and 24 of those were interviewed. At least one moderate-to-high unmet information need was reported by 58%, 71%, and 57% of participants pre-diagnosis, during diagnosis, and during treatment, respectively. Between 45%-54% of women were satisfied with the type and timing of information pre-diagnosis, increasing during diagnosis (61%-80%) and treatment (64%-85%). The most reported preferred sources of information included a doctor/healthcare provider, internet search, family/friends, and printed materials. Our qualitative analysis highlighted three important issues about the information received: (1) physical effects are privileged over emotional effects; (2) more information is better (but not always); (3) certain sources of information are given more credibility.

Conclusions: Many endometrial cancer patients have unmet information needs and are unsatisfied with the type, timing, or delivery of information received. Patients would prefer continuity and support from healthcare providers who are the key sources of cancer information. Cancer providers should consider women’s capacities and needs when delivering information.

  1. Australian Institute of Health and Welfare. Cancer data in Australia: AIHW, Australian Government; 2023 [Available from: https://www.aihw.gov.au/reports/cancer/cancer-data-in-australia].
  2. Faller H, et al. (2016) Satisfaction with information and unmet information needs in men and women with cancer. J Cancer Surviv 10, 62–70. https://doi.org/10.1007/s11764-015-0451-1.
  3. Iskandarsyah A, et al. (2013) Satisfaction with information and its association with illness perception and quality of life in Indonesian breast cancer patients. Support Care Cancer. 21(11):2999-3007. doi: 10.1007/s00520-013-1877-5.
  4. Llewellyn CD, et al. (2006). How satisfied are head and neck cancer (HNC) patients with the information they receive pre-treatment? Results from the satisfaction with cancer information profile (SCIP). Oral Oncol. 42(7):726-34. doi: 10.1016/j.oraloncology.2005.11.013.