Edmondson, AJ, Birtwistle, J orcid.org/0000-0002-6083-589X, Catto, JWF et al. (1 more author) (2017) The patients' experience of bladder cancer diagnosis: a systematic review of the qualitative evidence. Journal of Cancer Survivorship, 11 (4). pp. 453-461. ISSN 1932-2259
Abstract
Purpose: 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 that 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. Method: 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 the experiences. Results: 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 is distressing. Much less is known about the quality of life of patients receiving conservative treatments such as Bacillus Calmette-Guerin (BCG). Conclusions: 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. Implications for Cancer Survivors: Collective knowledge of the patients’ self-reported experience of the cancer care pathway will facilitate understanding of the outcomes following treatment.
Metadata
Item Type: | Article |
---|---|
Authors/Creators: |
|
Copyright, Publisher and Additional Information: | © The Author(s) 2017. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. |
Keywords: | Bladder Cancer; diagnosis; treatment; cystectomy; quality of life; patient experience |
Dates: |
|
Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Health Sciences (Leeds) > Academic Unit of Psychiatry and Behavioural Sciences (Leeds) The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Health Sciences (Leeds) > Centre for Health Services Research (Leeds) |
Funding Information: | Funder Grant number Yorkshire Cancer Research R/142565 |
Depositing User: | Symplectic Publications |
Date Deposited: | 21 Apr 2017 11:38 |
Last Modified: | 23 Jun 2023 22:27 |
Status: | Published |
Publisher: | Springer Verlag |
Identification Number: | 10.1007/s11764-017-0603-6 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:115255 |