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

Research output: Contribution to journalReview article

13 Citations (Scopus)

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 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.

Method
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.

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 are 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.
Original languageEnglish
Pages (from-to)453-461
Number of pages9
JournalJournal of Cancer Survivorship
Volume11
Issue number4
Early online date17 Feb 2017
DOIs
Publication statusPublished - Aug 2017

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Cite this

Edmondson, Amanda J. ; Birtwistle, Jacqueline C. ; Catto, James W.F. ; Twiddy, Maureen. / The patients’ experience of a bladder cancer diagnosis : a systematic review of the qualitative evidence. In: Journal of Cancer Survivorship. 2017 ; Vol. 11, No. 4. pp. 453-461.
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abstract = "PurposeBladder 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.MethodThis 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.ResultsThe 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).ConclusionsThe 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 survivorsCollective knowledge of the patients’ self-reported experience of the cancer care pathway will facilitate understanding of the outcomes following treatment.",
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The patients’ experience of a bladder cancer diagnosis : a systematic review of the qualitative evidence. / Edmondson, Amanda J.; Birtwistle, Jacqueline C.; Catto, James W.F.; Twiddy, Maureen.

In: Journal of Cancer Survivorship, Vol. 11, No. 4, 08.2017, p. 453-461.

Research output: Contribution to journalReview article

TY - JOUR

T1 - The patients’ experience of a bladder cancer diagnosis

T2 - a systematic review of the qualitative evidence

AU - Edmondson, Amanda J.

AU - Birtwistle, Jacqueline C.

AU - Catto, James W.F.

AU - Twiddy, Maureen

PY - 2017/8

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N2 - PurposeBladder 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.MethodThis 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.ResultsThe 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).ConclusionsThe 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 survivorsCollective knowledge of the patients’ self-reported experience of the cancer care pathway will facilitate understanding of the outcomes following treatment.

AB - PurposeBladder 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.MethodThis 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.ResultsThe 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).ConclusionsThe 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 survivorsCollective knowledge of the patients’ self-reported experience of the cancer care pathway will facilitate understanding of the outcomes following treatment.

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KW - Diagnosis

KW - Treatment

KW - Cystectomy

KW - Quality of life

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