Qualitative Findings From a Survey Measuring Informational Needs and Quality of Life of Women Living With Metastatic Breast Cancer.

Abstract

Background: People living with metastatic breast cancer (MBC) may have different support requirements to those with early stage breast cancer (EBC). These differences can be substantial, particularly as care pathways and information are often designed around the latter. There is limited understanding of how these discrepancies impact patients with MBC.

Aims: In the LIMBER study (Living with Metastatic Breast Cancer), we explored the distinct and unmet needs of people living with MBC.

Methods: In collaboration with people living with MBC and healthcare professionals (HCPs), we developed an online survey comprising fixed and free text responses. Fixed responses and overall study demographics from the main LIMBER study have been published elsewhere. A framework analysis of the free text comments is reported here.

Results: The resulting thematic map has seven main themes - friends and family, reactions of others, healthcare professionals, systems & processes, knowledge & information, outlook & goals and wellbeing. Participants reflected that comments made by friends and family were often well-meaning but showed misunderstanding of the disease. This was particularly noticeable in understanding the difference between MBC and EBC. There were references to the lack of support and information from HCPs.

Conclusions: The analysis of free text comments from this survey demonstrates the impact that MBC can have, particularly without robust support or accessible information. Understanding areas where patients have outstanding needs provides insight into how best to promote coping strategies and improved quality of life, while informing those who provide informal and formal care.