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2022-RA-1443-ESGO Patient decision aids in genetic testing for women with ovarian cancer
  1. Monika Sobocan1,
  2. Dhivya Chandrasekaran2,
  3. Michail Sideris1,
  4. Oleg Blyuss1,
  5. Rowan Miller3,
  6. Tina Mills-Baldock4,
  7. Shanthini Crusz3,
  8. Li Sun1,
  9. Olivia Evans1,
  10. Lucy Jenkins5,
  11. Munaza Ahmed5,
  12. Ajith Kumar5,
  13. Michelle Lockley6,
  14. Naveena Singh7,
  15. Asma Faruqi7,
  16. Laura Casey7,
  17. Elly Brockbank8,
  18. Saurabh Phadnis8,
  19. Giorgia Trevisan7,
  20. Rosa Legood9 and
  21. Ranjit Manchanda1
  1. 1Wolfson Institute of Population Health, Barts CRUK Cancer Centre, Queen Mary University of London, London, UK
  2. 2Department of Gynaecological Oncology, University College London Hospital, London, UK
  3. 3Department of Medical Oncology, Barts Health NHS Trust, London, UK
  4. 4Department of Medical Oncology, Barking, Havering and Redbridge University Hospitals, Essex, UK
  5. 5North East Thames Regional Genetics Service, Great Ormond Street Hospital, London, UK
  6. 6Barts Cancer Institute, Queen Mary University of London, London, UK
  7. 7Department of Pathology, Barts Health NHS Trust, London, UK
  8. 8Department of Gynaecological Oncology, Barts Health NHS Trust, London, UK
  9. 9Department of Health Services Research and Policy, London School of Hygiene and Tropical Medicine, London, UK


Introduction/Background Genetic-testing at ovarian cancer (OC) diagnosis is recommended in all clinical guidelines. The level of detailed information patients should be provided for informed decision making regarding genetic-testing is unknown. We evaluate patient preference for short or detailed/extensive Decision-Aids (DA) or written information-sheets for pre-test decision making.

Methodology A more detailed DA was developed using patient and stakeholder input following the principles/methodology of IPDAS (International Patients Decision Aids Standards). Unselected patients at OC-diagnosis were asked to evaluate both a pre-existing short and new long DA version. Patients then underwent mainstreaming genetic-testing by a cancer clinician. Data were collected on satisfaction, readibility, understanding, emotional well-being and preference for long/short-DA. Appropriate inferential descriptive and regression analyses were undertaken.

Results The mean-age of patients was 66-years (IQR=11), and 85% were white-British ethnicity. 74% found the DAs helpful/useful in decision making. Women reported higher levels of satisfaction (86% vs. 58%, p<0.001), right amount of information provided (76.79% vs.49.12%, p<0.001) and improved understanding (p<0.001) with the long-DA compared to short-DA. There was no statistically significant difference in the emotional outcomes (feeling worried/concerned/reassured/upset) between ‘short’ vs. ‘long’ DA. 74% patients preferred the long and 24% the short DA. Regression analysis suggested patients undergoing treatment (coeff=0.603; CI:0.165–1.041, p=0.007), those with recurrence (coeff=0.493; CI:0.065–0.92, p=0.024) and older women (coeff=0.042; CI:0.017–0.066, p=0.001) preferred the long-DA . Ethnicity did not affect any outcomes or overall preference for long/short-DA. 36% indicated they changed their decision regarding testing following mainstreaming counselling and 26% would have made the decision without it.

Conclusion A longer DA in OC patients has higher satisfaction without increasing any emotional distress. Older women and those undergoing treatment/recurrence prefer more extensive information, whilst those in remission preferred a shorter-DA.

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