Starkings Rachel, Fallowfield Lesley, Russ Stephanie, Jenkins Valerie
SHORE-C, Brighton and Sussex Medical School, University of Brighton and University of Sussex, Brighton, UK.
Psychooncology. 2025 May;34(5):e70177. doi: 10.1002/pon.70177.
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.
In the LIMBER study (Living with Metastatic Breast Cancer), we explored the distinct and unmet needs of people living with MBC.
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.
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.
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.
转移性乳腺癌（MBC）患者的支持需求可能与早期乳腺癌（EBC）患者不同。这些差异可能很大，尤其是因为护理途径和信息通常是围绕后者设计的。对于这些差异如何影响MBC患者，人们了解有限。
在LIMBER研究（转移性乳腺癌患者的生活）中，我们探讨了MBC患者独特的未满足需求。
我们与MBC患者和医疗保健专业人员（HCPs）合作，开发了一项包含固定和自由文本回复的在线调查。主要LIMBER研究的固定回复和总体研究人口统计学数据已在其他地方发表。本文报告了对自由文本评论的框架分析。
生成的主题地图有七个主要主题——朋友和家人、他人的反应、医疗保健专业人员、系统与流程、知识与信息、前景与目标以及幸福感。参与者反映，朋友和家人的评论往往善意，但显示出对疾病的误解。这在理解MBC和EBC之间的差异时尤为明显。有提到缺乏来自HCPs的支持和信息。
本次调查中对自由文本评论的分析表明了MBC可能产生的影响，尤其是在缺乏有力支持或获取信息的情况下。了解患者有突出需求的领域，有助于深入了解如何最好地促进应对策略和提高生活质量，同时为提供非正式和正式护理的人员提供信息。
