Purpose
To determine the experiences, information, support needs and quality of life of women in the UK living with metastatic breast cancer (MBC) to provide content for educational materials.
Methods
An on-line survey, hosted for 3 months on a UK MBC charity website, comprised sections covering issues such as: - communication about MBC treatment and management, helpful and less helpful things that healthcare professionals, family and friends did or said and completion of the Patient Roles & Responsibilities Scale (PRRS).
Results
143 patients participated; 48/143(33%) presented de novo; 54/143(38%) had been living with MBC >2 years. PRRS analysis revealed that MBC imposed a serious impact upon most respondents’ own caring abilities and social lives. A majority 98/139(71%) wished they had known more about MBC before their diagnosis, 63/134(47%) indicated that they still did not fully understand their illness; merely 78/139(56%) had access to a specialist nurse and only 69/135(51%) had been offered any additional support. Respondents reported little consideration given to their lifestyle/culture during consultations and inconsistent information, support services, continuity of care or access to clinical trials. They commented upon things health care professionals/friends and family did or said that were useful and cited other behaviours that were especially unhelpful.
Conclusions
MBC exerted a deleterious impact upon patients’ activities of daily living which were exacerbated in part by significant gaps in support, communication, and information.
Implications for Cancer Survivors
LIMBER results are informing the content of educational materials currently being developed for patients’ formal and informal carers.</p
