RESTORE-C19
Research type
Research Study
Full title
Exploring the experiences and outcomes of patients not offered immediate breast REconstruction after maSTectOmy for bREast cancer during the COVID-19 pandemic
IRAS ID
302580
Contact name
Katherine Fairhurst
Contact email
Sponsor organisation
University of Bristol
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
Research Summary
Immediate breast reconstruction is offered to improve quality of life for women undergoing mastectomy (removal of the breast) for breast cancer. During the COVID-19 pandemic, however, services were reorganised to prioritise frontline and urgent care. As a result, women requiring mastectomy were not offered immediate breast reconstruction and waiting lists for delayed reconstruction have lengthened.The RESTORE-C19 study will explore what happened to the women not offered immediate reconstruction due to the COVID-19 pandemic. It will explore women’s experiences; how these could be improved and what decisions they have made about delayed reconstruction and why. This will provide much-needed information to support women whose treatment was affected by COVID-19, and to ensure services are provided to meet their needs. The findings from this work will also be helpful for other groups of women who may not be routinely offered immediate breast reconstruction, including those who smoke, are overweight, or who have complex medical problems.
Summary of Results
The National Institute for Health and Care Excellence (NICE) recommended offer of immediate breast reconstruction for women requiring mastectomy (removal of the whole breast), was withdrawn during the COVID-19 pandemic as part of NHS reorganisation to prioritise frontline care. There is ongoing disturbance to delayed breast reconstruction services due to the surgical backlog, strike action and the understandable prioritisation of cancer care. RESTORE C19 was an interview study performed to understand and explore the outcomes and experiences of women who were denied immediate breast reconstruction during the first six months of the COVID-19 pandemic.The 18 women interviewed had a median age of 48.5 years and a broad age range of between 34-67 year. Women were invited from several areas of the UK and the interviews were completed at a time when many women were approaching three years since their mastectomy.
We found that a third of women had decided against any form of delayed breast reconstruction, another third had either received or were waiting for a DIEP (flap of skin and fat taken from the patient’s abdomen to fashion a new breast), and the final third had either received or were seeking a symmetrizing mastectomy (removal of the other breast to be flat).
Key themes were identified of 1. Inadequate support; 2. Delay affects reconstruction decision making; and 3. Achieving symmetry is desirable beyond reconstruction for many women. Importantly, all women were profoundly grateful for receiving their breast cancer care without delay and understood and accepted the need for restrictions. However, we know that hundreds of women experienced much of their breast cancer care alone, without the support of loved ones, and with limited access to cancer recovery support services. Whilst some coped well with this and “didn’t miss what they didn’t know about”, others felt profoundly traumatised and some of their partners have been significantly affected also, causing lasting impact to their quality of life and relationships. In addition, many women felt their desire for symmetry or breast reconstruction had “paled into insignificance” in the months and years following their treatment; some felt abandoned, others that at the very least they had to chase for access to care, advice and support.
Further work should be directed at developing an individualised and adaptable approach to support, particularly in the months and years after treatment ends. There is also a clear need for more equitable access to different reconstructive options for all women, including symmetrising mastectomy.
REC name
Wales REC 4
REC reference
21/WA/0347
Date of REC Opinion
10 Nov 2021
REC opinion
Favourable Opinion