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

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.

Impact of patient information format on the experience of cancer patients treated with radiotherapy

“…Post-RT, a feeling of abandonment due to the burden of ongoing SE further exacerbates this dissatisfaction [66] . Failure to address a patient's needs and consider their lifestyle contributes to a substandard QoL, lower than they had expected [37] .…”

“…While several studies have reported that patients have a greater desire for information before commencing RT [11] , [33] , [37] , [39] , [72] , [73] , there may be merit to reinforcing information provisions at various stages to strengthen the patient's comprehension [43] .…”

“…Despite this, there are reports that clinicians have underestimated the patient’s desire for information [16] , [22] . Additionally, due to an escalating demand on the healthcare system [5] , and a reduction in appointment time duration [70] , patients have found themselves in need of more information and support [14] , [19] , [30] , [37] , [44] , [73] .…”

“…There continues to be unmet information needs regarding the SE of treatment [14] , [19] , [37] , [44] , [63] , leaving patients dissatisfied with a lack of knowledge, fostering misconceptions about RT and inducing a sense of being blind-sided by these challenges [20] , [47] . Post-RT, a feeling of abandonment due to the burden of ongoing SE further exacerbates this dissatisfaction [66] .…”

“…It could be assumed that patients are overloaded with information, at a time of heightened anxiety, fear, or depression, yet studies have shown that most patients want to have more information than they receive [11] , [14] , [37] , [42] , [57] . However if giving patients all the information we think they need, it is also essential to consider how this is best delivered to ensure they can comprehend it without being detrimental to understanding their care.…”