Edmondson Amanda J, Birtwistle Jacqueline C, Catto James W F, Twiddy Maureen
Centre for Applied Research in Health, University of Huddersfield, Huddersfield, UK.
Institute of Health Sciences, University of Leeds, Leeds, UK.
J Cancer Surviv. 2017 Aug;11(4):453-461. doi: 10.1007/s11764-017-0603-6. Epub 2017 Feb 17.
Bladder cancer (BC) is a common disease with disparate treatment options and variable outcomes. Despite the disease's high prevalence, little is known of the lived experience of affected patients. National patient experience surveys suggest that those with BC have poorer experiences than those with other common cancers. The aim of this review is to identify first-hand accounts of the lived experiences of diagnosis through to survivorship.
This is a systematic review of the qualitative evidence reporting first-hand accounts of the experiences of being diagnosed with, treated for and surviving bladder cancer. A thematic analysis and 'best-fit' framework synthesis was undertaken to classify these experiences.
The inconsistent nature of symptoms contributes to delays in diagnosis. Post-diagnosis, many patients are not actively engaged in the treatment decision-making process and rely on their doctor's expertise. This can result in patients not adequately exploring the consequences of these decisions. Learning how to cope with a 'post-surgery body', changing sexuality and incontinence are distressing. Much less is known about the quality of life of patients receiving conservative treatments such as Bacillus Calmette-Guerin (BCG).
The review contributes to a greater understanding of the lived experience of bladder cancer. Findings reflect a paucity of relevant literature and a need to develop more sensitive patient-reported outcome measures (PROMs) and incorporate patient-reported outcomes in BC care pathways.
Collective knowledge of the patients' self-reported experience of the cancer care pathway will facilitate understanding of the outcomes following treatment.
膀胱癌（BC）是一种常见疾病，治疗选择各异，预后也不尽相同。尽管该疾病发病率很高，但对于受影响患者的生活经历却知之甚少。全国患者体验调查表明，膀胱癌患者的体验比其他常见癌症患者更差。本综述的目的是确定从诊断到 survivorship 的生活经历的第一手描述。
这是一项对定性证据的系统综述，报告了被诊断为膀胱癌、接受治疗并存活下来的患者的第一手经历。采用主题分析和“最佳拟合”框架综合法对这些经历进行分类。
症状的不一致性导致诊断延迟。诊断后，许多患者没有积极参与治疗决策过程，而是依赖医生的专业知识。这可能导致患者没有充分探讨这些决策的后果。学习如何应对“手术后的身体”、性方面的变化和尿失禁令人痛苦。对于接受诸如卡介苗（BCG）等保守治疗的患者的生活质量了解得更少。
该综述有助于更深入地了解膀胱癌患者的生活经历。研究结果反映出相关文献匮乏，需要开发更敏感的患者报告结局测量指标（PROMs），并将患者报告的结局纳入膀胱癌护理路径。
患者对癌症护理路径的自我报告经历的集体知识将有助于理解治疗后的结局。
