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. 2023 Jul 11;31(8):459.
doi: 10.1007/s00520-023-07928-8.

Living with metastatic breast cancer (LIMBER): experiences, quality of life, gaps in information, care and support of patients in the UK

L Fallowfield  1 , R Starkings  2 , C Palmieri  3   4 , A Tait  5 , L Stephen  5 , S May  2 , R Habibi  2 , S Russ  2 , V Shilling  2 , V Jenkins  2
Affiliations

Living with metastatic breast cancer (LIMBER): experiences, quality of life, gaps in information, care and support of patients in the UK

L Fallowfield et al. Support Care Cancer. .

Abstract

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 online 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 and Responsibilities Scale (PRRS).

Results: A total of 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.

Keywords: Advanced/metastatic/secondary breast cancer; Communication; Information needs; Patient online survey; Support resources.

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Conflict of interest statement

LJF, V and CP were awarded a grant from Make2ndsCount Charity to conduct the research. AT is a patient representative, and LS is a Trustee for Make2ndsCount and patient advocate. CP has grant funding from Pfizer and Daiichi Sankyo and honoraria from Pfizer, Roche, Daiichi Sankyo, Novartis, Exact sciences, Gilead, SeaGen and Eli Lilly. All other authors have no conflicts of interest to declare.

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