Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2023

A pilot study to assess the feasibility and acceptability of collecting patient reported outcome and experience data from registry participants with primary epithelial ovarian cancer (#394)

Sherine Sandhu 1 , Sharnel Perera 1 , Penelope Schofield 2 3 , Paul Cohen 4 , Sue Hegarty 5 , Hayley Russell 5 , Robert Rome 1 , Simon Hyde 6 , Kristin Young 7 , Yeh Chen Lee 8 , Gary Richardson 9 , Rhonda Farrell 10 , Mahendra Naidoo 1 , Tahlia Knights 1 , Tran Nguyen 1 , John Zalcberg 1
  1. Monash University, Melbourne, Victoria, Australia
  2. Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia
  3. Swinburne University, Melbourne, Victoria, Australia
  4. University of Western Australia, Perth, Western Australia, Australia
  5. Ovarian Cancer Australia, Melbourne, Victoria, Australia
  6. Mercy Health, Melbourne, Victoria, Australia
  7. National Gynae-Oncology Registry, Melbourne, Victoria, Australia
  8. Prince of Wales Hospital, Sydney, New South Wales, Australia
  9. Cabrini Health, Melbourne, Victoria, Australia
  10. Chris O'Brien Lifehouse, Sydney, New South Wales, Australia

Aim: To evaluate the feasibility and acceptability of collecting patient reported outcome and experience data (PROMs and PREMs) in the National Gynae-Oncology Registry’s ovarian cancer module (OvCR).

Methods: Prospective longitudinal pilot study with surveys at baseline, 6 and 12-months post-diagnosis. OvCR participants, newly diagnosed (≤3 months) with ovarian, tubal or peritoneal cancer at four Australian hospital sites were eligible to participate. Target sample size: 15-20 participants per hospital site. Survey distribution methods were electronic (email/SMS) and/or paper-based (sent by post). Follow-up attempts were made for incomplete surveys. Patient reported outcome measures were the European Organisation for Research and Treatment of Cancer’s (EORTC) Quality of Life Questionnaire (QLQ-C30) and Ovarian Cancer module (QLQ-OV28). Patient reported experience measure was the Australian Hospital Patient Experience Question set (AHPEQ). In addition, 10 study-specific items measured survey acceptability. Baseline feasibility and acceptability data for December 2022- July 2023 are presented.

Results: Baseline surveys were sent to 61 eligible patients. Full and partial survey completion rates were 34% (n=21) and 7% (n=4) respectively. More surveys were completed online (n=15) than on paper (n=10). Twenty-two participants completed the survey acceptability measures, with almost all reporting the survey was ‘very easy’ to complete (n=20) and understand (n=20). Most considered the survey length ‘about right’ (n=21). Preferred frequency to receive PROMs and PREMs was monthly (n=8), followed by quarterly (n=6). Fewer (n=4) participants wanted to receive the surveys every 6-months. Preferred survey completion method was online (n=12), followed by on paper (n=8). Six participants believed the survey triggered thoughts about their experiences or outcomes that they had not previously considered or had forgotten.

Conclusion: Preliminary response rates for PROMs and PREMs by OvCR participants are low. The survey’s readability, length, ease of completion, and dissemination methods appear acceptable. Early results suggest patients prefer to receive these surveys more often than every 6-months.