Abstract 219P
Background
Studies have shown that there are considerable knowledge gaps related to the diagnosis and management of advanced/metastatic breast cancer (ABC/MBC), and limited availability of patient-focussed information around areas of concern. Workshop findings from 92 advocates from 27 countries (ABC19 conference) highlighted many practical concerns and unmet information needs, but there were several cultural variations and healthcare delivery differences. We wanted to compare these findings with those from a UK population via an on-line survey.
Methods
An initial set of survey questions were drafted and included variations of those employed during the ABC19 workshop. These were discussed and refined with MBC PPI volunteers (n=5). The survey comprised 7 sections covering topics such as information needs, communication, treatment & management of MBC. There was room to leave comments and reflections, together with the Patient Roles & Responsibilities Scale (PRRS). The survey was hosted by Make2ndsCount for 3 months and advertised through social media.
Results
144 people living with MBC (mean age 51.76yr) completed the survey, (90% white; 49% higher education; 81% partnered; 33% employed; 33% first diagnosis of MBC; 37% had been living with MBC > 2 years; 57% on a targeted therapy). PRRS showed that MBC had a serious impact on people’s social life and caring abilities. Term most frequently used by HCPs was MBC (58%), but patients’ preferred terms were secondary BC (56%). Majority (71%) wished they had known about the risk of developing MBC before their diagnosis, and 47% indicated they still did not understand fully their illness and only 48% had been offered additional support or resources. They felt there was a lack of consideration about their lifestyle/culture during consultations and provided a range of comments on what health care professionals/friends and family did that helped and behaviours that were not so useful.
Conclusions
Results from the LIMBER survey will be used to guide the content of educational materials for patients, their carers, doctors, and nurses.
Clinical trial identification
Editorial acknowledgement
Legal entity responsible for the study
University of Sussex.
Funding
Make2ndsCount Charity.
Disclosure
All authors have declared no conflicts of interest.