2 research outputs found
Recommended from our members
Living with Metastatic Breast cancer (LIMBER): experiences, quality of life, gaps in information, care, and support of patients in the UK
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.Â
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).Â
ResultsÂ
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.Â
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.Â
Implications for Cancer Survivors
LIMBER results are informing the content of educational materials currently being developed for patients’ formal and informal carers.</p
Recommended from our members
Patients’ views and experiences on the supported self-management/patient-initiated follow up pathway for breast cancer
Purpose: To explore patients’ expectations and experience of Supportive Self-Management (SSM)/ Patient Initiated Follow Up (PIFU) following breast cancer treatments over a 12-month period. Methods: 32/110 (29%) patient participants in the PRAGMATIC (Patients’ experiences of a suppoRted self-manAGeMent pAThway In breast Cancer) study were interviewed at baseline, 3, 6, 9 and 12-months. Interviews in this sub-study used a mix-methods approach to explore understanding of the pathway, confidence in self-management, triggers to seek help and/or re-engage with the clinical breast team and impact of the COVID-19 pandemic. Responses to pre-assigned categories were summarised as counts/ percentages and collated in tabular or graphic format. Free responses were recorded verbatim and reviewed using framework analysis. Results: Participants regarded the SSM/PIFU pathway as a way to save time and money for them and the National Health Service (NHS) (14/32; 44%) and as a means of assuming responsibility for their own follow-up (18/32; 56%). Most maintained (very/somewhat) confidence in managing their BC follow-up care (baseline 31/32, 97%; 12-months 29/31, 93%). During the year 19% (5/26) stopped endocrine therapy altogether because of side effects. Qualitative analysis revealed general satisfaction with SSM/PIFU and described the breast care nurses as reassuring and empathic. However, there was a lingering anxiety about identifying signs and symptoms correctly, particularly for those with screen-detected cancers. There was also uncertainty about who to contact for psychological support. The COVID-19 pandemic discouraged some participants from contacting the helpline as they did not want to overburden the NHS. Conclusions: The results show that during the first year on the SSM/PIFU pathway, most patients felt confident managing their own care. Clinical teams should benefit from understanding patients’ expectations and experience and potentially modify the service for men with BC and/or those with screen detected breast cancers.</p