Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2022

Patient-determined appropriateness of the EORTC QLQ-C30 and QLQ-OV28 for routine PROMs data collection in the National Gynae-Oncology Registry (NGOR): A thematic analysis of the perspectives and content needs of women with ovarian cancer. (#425)

Sharnel Perera 1 , Alice Sporik 1 , Penelope Schofield 2 , Paul Cohen 3 , Simon Hyde 4 , Sue Hegarty 5 , Hayley Russell 5 , Natalie Heriot 6 , John Zalcberg 1
  1. Cancer Research Program, Monash University, Melbourne, Victoria, Australia
  2. Department of Psychological Sciences, Swinburne University of Technology, Hawthorn, Victoria, Australia
  3. Obstetrics and Gynaecology, University of Western Australia, 6009, Western Australia, Australia
  4. Gynaecological Oncology, Mercy Hospital for Women, Melbourne, Victoria, Australia
  5. Support Programs, Ovarian Cancer Australia, Melbourne, Victoria, Australia
  6. Ambulance Victoria, Melbourne, Victoria, Australia

Aim: To gather consumer-identified salient indictors of ovarian, fallopian tube and primary peritoneal (OTP) cancer experiences and outcomes from the EORTC QLQ-C30/OV28.  This data will aid in the development of a bespoke PROMs tool for use in the National Gynaecological Oncology Registry (NGOR), as a measure of QoL and QoC for women with OTP cancer.

Methods: Four focus groups were held with a total of 24 OTP cancer patients (Mean age = 62.6 years, SD=10.22).  The items in the EORTC QLQ-C30/OV28 were discussed regarding their importance and relevance for the purposes of PROMs data collection in the NGOR.  Data were analysed via thematic analysis.

Results:  Participants were predominantly from metropolitan areas (66.7%), currently in treatment (50%), with stage III disease (54.2%).  All items of the EORTC QLQ-C30/OV28 were considered important to include in routine PROMs data collection within the NGOR.  All women spoke of the considerable impact to their physical wellbeing and QoL while undergoing treatment, where symptoms such as neuropathy, fatigue, sleep disturbance, gastro-intestinal and genitourinary symptoms became especially burdensome.  Desire to engage in intimacy was also diminished during treatment, where body image and related emotional states impacted their sense of self.  All participants urged collection of PROMs at least every 6-months from diagnosis, preferably using an online format.  The preferred format should also include links and resources for evidence-based and appropriate interventions (e.g. physiotherapy) to aid in symptom management.

Conclusions: The EORTC QLQ-C30/OV28 provides a comprehensive list of cancer experiences and outcomes that can act as key indicators of wellness and QoL for women with OTP cancer.  Participants recognised the value in routine PROMs data collection as a means of chronicling their own cancer journey, which could also prove useful in a clinical context, as a catalyst for refining and tailoring patient-centred care for women with OTP cancer.