The patients’ experience of a bladder cancer diagnosis: a systematic review of the qualitative evidence

Amanda J. Edmondson, Jacqueline C. Birtwistle, James W.F. Catto, Maureen Twiddy

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.