e-Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2021

Patient-reported outcomes of Medicine Access Programmes: A sub-study of KARMA (Kisqali Access Registry for Metastatic Breast Cancer in Australia) (#342)

Vanessa Wong 1 , Richard De Boer 2 3 , Sally Baron-Hay 4 , Robert Blum 5 , Benjamin Forster 6 , Sue Chua 7 , Kerrie Clarke 8 , Katharine Cuff 9 , Michael Green 10 , Elgene Lim 11 , Kelly Mok 12 , Louise Wigston (Nott) 13 , Michelle Nottage 14 , Ali Tafreshi 15 , Daphne Tsoi 16 , Anthony Uccelini 17 , Peter Gibbs 18 19 , Sheau Wen Lok 2 19
  1. Walter and Eliza Hall Institute of Medical Research, Parkville, VIC
  2. Peter MacCallum Cancer Centre, Melbourne, VIC
  3. St Vincent's Private Hospital, East Melbourne, VIC
  4. Northern Cancer Institute, St Leonards, NSW
  5. Bendigo Health, Bendigo, VIC
  6. The Mater Hospital, North Sydney, NSW
  7. Eastern Health, Box Hill, VIC
  8. Border Medical Oncology, Albury Wodonga Regional Cancer Centre, Albury East, NSW
  9. Princess Alexandra Hospital , Woolloongabba, QLD
  10. Epworth Freemasons, East Melbourne, VIC
  11. The Kinghorn Cancer Centre, Darlinghurst, NSW
  12. Liverpool Hospital, Liverpool, NSW
  13. Royal Hobart Hospital, Hobart, TAS
  14. Royal Brisbane Hospital, Herston, QLD
  15. Wollongong Private Hospital, Wollongong , NSW
  16. St John of God Subiaco Hospital, Subiaco, WA
  17. Olivia Newton-John Cancer and Wellness Centre, Austin Health, Heidelberg, VIC
  18. Western Health, Footscray, VIC
  19. Walter and Eliza Hall Institute of Medical Research, Victoria, Heidelberg, VIC, Australia

Background and Aim
Medicine access programmes (MAP) in oncology increasingly provide treatment that is otherwise unavailable to Australian patients. The KARMA multi-site national registry was developed to capture comprehensive treatment and outcome data for metastatic breast cancer patients that participated in the compassionate access ribociclib MAP from 2017-2018. Along with efficacy and safety data, a patient-reported outcomes (PRO) sub-study was developed to explore patients’ understanding about MAPs.

Methods
We approached patients from the KARMA registry who remain on ribociclib in combination with an aromatase inhibitor, having been enrolled initially in the ribociclib MAP. A PRO questionnaire was developed and patients interviewed via telephone to explore their awareness and experience of the ribociclib MAP.

Results
30 of 160 (19%) patients in KARMA were interviewed, with similar mean age (57.4 vs 53.6 years, p=0.11) but longer median time on ribociclib (33.6 vs 16.6 months, p<0.001) than patients not interviewed. 12 of 30 patients (40%) understood that ribociclib was first prescribed through a MAP, 10 (33%) reported that ribociclib prescription was through a clinical trial, 5 (17%) via government funding and 3 (10%) unsure. 28 of 30 (93%) patients felt fortunate to have access to an otherwise non-funded medication. 20 of 30 (67%) reported that they were more likely to be medication adherent on a MAP. When correlating PROs with clinician records, 17 of 30 (57%) patients reported dose reduction/interruption due to side effects compared to 23 of 30 (77%) reported by clinicians.

Conclusion
Patients surveyed had limited recollection how ribociclib was first provided. This is potentially explained by impaired recall over time but indicates a need for further education and improvement of the consent process. Increased patient awareness of access to new therapies may enhance treatment adherence. PRO data is an opportunity to explore patient experience to add to real-world registry data.