Abstract
BACKGROUND: Acceptance of the role of the fallopian tube in 'ovarian' carcinogenesis and the detrimental sequelae of surgical menopause in premenopausal women following risk-reducing salpingo-oophorectomy (RRSO) has resulted in risk-reducing early-salpingectomy with delayed oophorectomy (RRESDO) being proposed as an attractive alternative risk-reducing strategy in women who decline/delay oophorectomy. We present the results of a qualitative study evaluating the decision-making process among BRCA carriers considering prophylactic surgeries (RRSO/RRESDO) as part of the multicentre PROTECTOR trial (ISRCTN:25173360).
METHODS: In-depth semistructured 1:1 interviews conducted using a predeveloped topic-guide (development informed by literature review and expert consultation) until informational saturation reached. Wording and sequencing of questions were left open with probes used to elicit additional information. All interviews were audio-recorded, transcribed verbatim, transcripts analysed using an inductive theoretical framework and data managed using NVIVO-v12.
RESULTS: Informational saturation was reached following 24 interviews. Seven interconnected themes integral to surgical decision making were identified: fertility/menopause/cancer risk reduction/surgical choices/surgical complications/sequence of ovarian-and-breast prophylactic surgeries/support/satisfaction. Women for whom maximising ovarian cancer risk reduction was relatively more important than early menopause/quality-of-life preferred RRSO, whereas those more concerned about detrimental impact of menopause chose RRESDO. Women managed in specialist familial cancer clinic settings compared with non-specialist settings felt they received better quality care, improved hormone replacement therapy access and were more satisfied.
CONCLUSION: Multiple contextual factors (medical, physical, psychological, social) influence timing of risk-reducing surgeries. RRESDO offers women delaying/declining premenopausal oophorectomy, particularly those concerned about menopausal effects, a degree of ovarian cancer risk reduction while avoiding early menopause. Care of high-risk women should be centralised to centres with specialist familial gynaecological cancer risk management services to provide a better-quality, streamlined, holistic multidisciplinary approach.
| Original language | English |
|---|---|
| Pages (from-to) | 122-132 |
| Number of pages | 13 |
| Journal | Journal of Medical Genetics |
| Volume | 59 |
| Issue number | 2 |
| Early online date | 10 Feb 2021 |
| DOIs | |
| Publication status | Published - 1 Feb 2022 |
Bibliographical note
AcknowledgementsWe are grateful to all women took part in the interviews. We are grateful to the central trials coordinating team at the Centre for Experimental Cancer Medicine at QMUL, led by Kelly Mousa. We are grateful to the independent members of the trial steering committee (chaired by Mr Tim Mould) and the data monitoring committee (chaired by Professor Richard Edmondson) and central pathology committee (Professor Naveena Singh (chair), Professor W Glenn McCluggage, Dr Raji Ganesan, Dr Gareth Bryson, Dr Gareth Rowlands, Dr Rupali Arora). We acknowledge support provided by a number of charities and stakeholders
including BRCA Umbrella (Caroline Presho), The Eve Appeal, Ovacome, Target Ovarian Cancer and Ovarian Cancer Action. GDE is supported through the NIHR Manchester Biomedical Research Centre (IS-BRC-1215–20007). We are grateful to all our collaborators of the PROTECTOR study: Dr Munaza Ahmed (North East Thames Cancer Genetics Service, Great Ormond Street Hospital NHS Foundation Trust), Dr Aarti Sharma (Cardiff and Vale UHB), Dr Gautam Mehra (Guy’s and St Thomas’ NHS Foundation Trust), Dr Adam Rosenthal (University College London Hospitals NHS Foundation Trust), Dr Ian Harley (Belfast Health & Social Care Trust), Dr Michelle Mackintosh & Prof Emma Crosbie (Manchester University NHS Foundation Trust), Professor Sadaf Ghaem-Maghami (Imperial College Healthcare NHS Trust), Professor Omer Devaja (Maidstone and Tunbridge Wells NHS Trust), Professor Sudha Sundar and Mr Janos Balega (Sandwell and West Birmingham Hospitals NHS Trust), Dr Tim Duncan (Norfolk and Norwich University Hospitals NHS Foundation Trust), Dr Iain Cameron (Gateshead Health NHS Foundation Trust), Dr Claire Newton (University Hospitals Bristol NHS Foundation Trust), Dr Sonali Kaushik (Brighton and Sussex University Hospitals NHS Trust), Dr Angela Brady (London North West Healthcare NHS Trust), Dr Supratik Chattopadhyay (University Hospitals of Leicester NHS Trust), Dr Natalia Povolotskaya (Portsmouth Hospitals NHS Trust), Dr Rema Iyer (East Kent Hospitals University NHS Trust), Dr Lucy Side (University Hospital Southampton NHS Foundation Trust), Dr Katie Snape (St George’s University Hospitals NHS Foundation Trust), Dr Anil Tailor (Royal Surrey County Hospital Foundation Trust), Dr Manon van Seters (Worcestershire Acute Hospital Trust), Dr Katherine Edey (Royal Devon & Exeter NHS Foundation Trust), Dr Sian Taylor (Liverpool Women’s Hospital NHS Foundation Trust), Dr Suma Kodiathodi (North Tees and Hartlepool NHS Foundation Trust), Dr Partha Sengupta (County Durham and Darlington NHS Foundation Trust), Dr Scott Fegan (NHS Lothian), Dr Karin Williamson (Nottingham University Hospitals NHS Trust), Dr Andrew Phillips (University Hospitals of Derby and Burton NHS Foundation Trust), Dr Mark Willett (East Lancashire Hospitals NHS Trust), Dr Tony Chalhoub (The Newcastle upon Tyne Hospitals NHS Foundation Trust), Dr Sanjay Rao (South Tees Hospitals NHS Foundation Trust), Dr Nicholas Matthews (South Tyneside and Sunderland NHS Foundation Trust), Dr Beena Abdul (Northampton General Hospitals NHS Trust), Dr Ibraheem Hamoodi (Northumbria Healthcare NHS
Foundation Trust), Dr Claire Park (Royal United Hospitals Bath NHS Foundation
Trust), Dr Jane Borley (Royal Cornwall Hospitals NHS Trust), Dr Richard Hutson (Leeds Teaching Hospitals NHS Trust), Dr Kerryn Lutchman-Singh (Swansea Bay University Health Board), Dr Richard Peevor (Betsi Cadwaladr University Health Board), Dr Mahalakshmi Gurumurthy (NHS Grampian), Dr Kalpana Ragupathy (NHS Tayside).
Funding
The study is supported by researchers at the Wolfson Institute of
Preventive Medicine, Queen Mary University of London (C16420/A18066). This work was supported and funded by Barts and The London Charity and Rosetrees Trust.
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