Exploring patients’ experience and perception of being diagnosed with bladder cancer: a mixed‐methods approach
Objective To determine patient experience and perception following a diagnosis of non‐muscle‐invasive bladder cancer (NMIBC). Patient and methods Patients were part of a prospective multicentre observational study recruiting patients with NMIBC for a urine biomarker study (DETECT II; ClinicalTrials....
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| Veröffentlicht in: | BJU international 2020-05, Vol.125 (5), p.669-678 |
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| creator | Tan, Wei Shen Teo, Chin Hai Feber, Andrew Sarpong, Rachael Brew‐Graves, Chris Ng, Chirk Jenn Baker, H. Whotton, N. Pearson, S. Hatton, J. Newton, M. Green, K. Rogers, M. Dann, A. Mills, R. Knight, H. Rane, A. Thomas, S. Reyner, S. Ridgway, S. Mccormick, J. Clark, M. Collins, G. Bowen, G. Srirangam, S. Cocks, S. Main, C. Grant, A. Lomas, C. Baird, Y. Moore, S. Margalef, J. Chadbourn, I. Clitheroe, P. Hodgkinson, S. Haydock, H. Natale, S. Smith, S. Smith, K. Royle, L. Madine, J. MacLean, K. Walsh, J. Power, A. Devereaux, L. Thompson, A. Scarratt, L. Johnson, J. Rothwell, J. Wardle, H. Pelluri, S. Scott, C. Taylor, J.A. Williams, S. Caddy, S. Buckhorn, K. Middleton, K. Proctor, C. Cresswell, J. Chilvers, A. Cain, M. Watson, D. Bradfield, S. Gregory, H. Drakeley, S. Davies, J.A. Williamson, L. Hill, P. Sinclair, A. Holbrook, B. Vankoutrik, L. Fossey, G. Richards, A. Henderson, A. Fennelly, R. Ames, K. Beesley, K. Rennie, K. Porter, T. Gipson, A. Piper, L. Chrisopoulou, A. Slevin, K. Whetton, K. Delves, G. Day, A. Bankole, T. Broadhead, S. Oblak, M. Donkov, I. Culmsee, C. Menzies, A.H. Jannapureddy, R. Kelkar, A. Longhurst, S. Worth, C. Mzazi, S. Poile, C. Cook, A. Brar, N. |
| description | Objective
To determine patient experience and perception following a diagnosis of non‐muscle‐invasive bladder cancer (NMIBC).
Patient and methods
Patients were part of a prospective multicentre observational study recruiting patients with NMIBC for a urine biomarker study (DETECT II; ClinicalTrials.gov: NCT02781428). A mixed‐methods approach comprising: (i) the Brief Illness Perception Questionnaire (Brief‐IPQ) and (ii) semi‐structured interviews to explore patients’ experience of having haematuria, and initial and subsequent experience with a NMIBC diagnosis. Both assessments were completed at 6 months after NMIBC diagnosis.
Results
A total of 213 patients completed the Brief‐IPQ. Patients felt that they had minimal symptoms (median [interquartile range, IQR] score 2 [0–5]) and were not particularly affected emotionally (median [IQR] score 3 [1–6]) with a minimal effect to their daily life (median [IQR] score 2 [0–5]). However, they remained concerned about their cancer diagnosis (median [IQR] score 5 [3–8]) and felt that they had no personal control over the cancer (median [IQR] score 2 [2–5]) and believed that their illness would affect them for some time (median [IQR] score 6 [3–10]). A significant association with a lower personal control of the disease (P |
| doi_str_mv | 10.1111/bju.15008 |
| format | Article |
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To determine patient experience and perception following a diagnosis of non‐muscle‐invasive bladder cancer (NMIBC).
Patient and methods
Patients were part of a prospective multicentre observational study recruiting patients with NMIBC for a urine biomarker study (DETECT II; ClinicalTrials.gov: NCT02781428). A mixed‐methods approach comprising: (i) the Brief Illness Perception Questionnaire (Brief‐IPQ) and (ii) semi‐structured interviews to explore patients’ experience of having haematuria, and initial and subsequent experience with a NMIBC diagnosis. Both assessments were completed at 6 months after NMIBC diagnosis.
Results
A total of 213 patients completed the Brief‐IPQ. Patients felt that they had minimal symptoms (median [interquartile range, IQR] score 2 [0–5]) and were not particularly affected emotionally (median [IQR] score 3 [1–6]) with a minimal effect to their daily life (median [IQR] score 2 [0–5]). However, they remained concerned about their cancer diagnosis (median [IQR] score 5 [3–8]) and felt that they had no personal control over the cancer (median [IQR] score 2 [2–5]) and believed that their illness would affect them for some time (median [IQR] score 6 [3–10]). A significant association with a lower personal control of the disease (P < 0.05) and a poorer understanding of the management of NMIBC (P < 0.05) was seen in patients aged >70 years. Many patients were uncertain about the cause of bladder cancer. Qualitative analysis found that at initial presentation of haematuria, most patients were not aware of the risk of bladder cancer. Patients were most anxious and psychologically affected between the interval of cystoscopy diagnosis and transurethral resection of bladder tumour (TURBT). Following TURBT, most patients were positive about their cancer prognosis.
Conclusion
Patients with NMIBC have a poor perception of disease control and believe that their disease will continue over a prolonged period of time. This is particularly more pertinent in the elderly. Patients are most psychologically affected during the interval between cancer diagnosis following cystoscopy and TURBT. Health awareness about bladder cancer remained poor with a significant number of patients unaware of the causes of bladder cancer. Psychological support and prompt TURBT following bladder cancer diagnosis would help improve the mental health of patients with NMIBC.</description><identifier>ISSN: 1464-4096</identifier><identifier>EISSN: 1464-410X</identifier><identifier>DOI: 10.1111/bju.15008</identifier><identifier>PMID: 31975539</identifier><language>eng</language><publisher>England: Wiley Subscription Services, Inc</publisher><subject>Aged ; Aged, 80 and over ; Attitude to Health ; Bladder cancer ; BladderCancer ; blcsm ; Cancer ; Cystoscopy ; Diagnosis ; Disease control ; Female ; Follow-Up Studies ; Geriatrics ; Hematuria ; Humans ; interview ; Invasiveness ; Male ; Medical diagnosis ; Medical prognosis ; Mixed methods research ; patient reported outcome measure ; Patients ; Perception ; Prospective Studies ; qualitative ; Quality of Life ; questionnaires ; Surveys and Questionnaires ; Trial ; Tumors ; Urinary Bladder Neoplasms - diagnosis ; Urinary Bladder Neoplasms - psychology</subject><ispartof>BJU international, 2020-05, Vol.125 (5), p.669-678</ispartof><rights>2020 The Authors BJU International Published by John Wiley & Sons Ltd on behalf of BJU International.</rights><rights>2020. This article is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4438-77537cec254c9b4349874f7f829248348c3759944245a592ea1b5ea2b09dc8a93</citedby><cites>FETCH-LOGICAL-c4438-77537cec254c9b4349874f7f829248348c3759944245a592ea1b5ea2b09dc8a93</cites><orcidid>0000-0002-6119-4043</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1111%2Fbju.15008$$EPDF$$P50$$Gwiley$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1111%2Fbju.15008$$EHTML$$P50$$Gwiley$$Hfree_for_read</linktohtml><link.rule.ids>230,314,777,781,882,1412,27905,27906,45555,45556</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/31975539$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Tan, Wei Shen</creatorcontrib><creatorcontrib>Teo, Chin Hai</creatorcontrib><creatorcontrib>Feber, Andrew</creatorcontrib><creatorcontrib>Sarpong, Rachael</creatorcontrib><creatorcontrib>Brew‐Graves, Chris</creatorcontrib><creatorcontrib>Ng, Chirk Jenn</creatorcontrib><creatorcontrib>Baker, H.</creatorcontrib><creatorcontrib>Whotton, N.</creatorcontrib><creatorcontrib>Pearson, S.</creatorcontrib><creatorcontrib>Hatton, J.</creatorcontrib><creatorcontrib>Newton, M.</creatorcontrib><creatorcontrib>Green, K.</creatorcontrib><creatorcontrib>Rogers, M.</creatorcontrib><creatorcontrib>Dann, A.</creatorcontrib><creatorcontrib>Mills, R.</creatorcontrib><creatorcontrib>Knight, H.</creatorcontrib><creatorcontrib>Rane, A.</creatorcontrib><creatorcontrib>Thomas, S.</creatorcontrib><creatorcontrib>Reyner, S.</creatorcontrib><creatorcontrib>Ridgway, S.</creatorcontrib><creatorcontrib>Mccormick, J.</creatorcontrib><creatorcontrib>Clark, M.</creatorcontrib><creatorcontrib>Collins, G.</creatorcontrib><creatorcontrib>Bowen, G.</creatorcontrib><creatorcontrib>Srirangam, S.</creatorcontrib><creatorcontrib>Cocks, S.</creatorcontrib><creatorcontrib>Main, C.</creatorcontrib><creatorcontrib>Grant, A.</creatorcontrib><creatorcontrib>Lomas, C.</creatorcontrib><creatorcontrib>Baird, Y.</creatorcontrib><creatorcontrib>Moore, S.</creatorcontrib><creatorcontrib>Margalef, J.</creatorcontrib><creatorcontrib>Chadbourn, I.</creatorcontrib><creatorcontrib>Clitheroe, P.</creatorcontrib><creatorcontrib>Hodgkinson, S.</creatorcontrib><creatorcontrib>Haydock, H.</creatorcontrib><creatorcontrib>Natale, S.</creatorcontrib><creatorcontrib>Smith, S.</creatorcontrib><creatorcontrib>Smith, K.</creatorcontrib><creatorcontrib>Royle, L.</creatorcontrib><creatorcontrib>Madine, J.</creatorcontrib><creatorcontrib>MacLean, K.</creatorcontrib><creatorcontrib>Walsh, J.</creatorcontrib><creatorcontrib>Power, A.</creatorcontrib><creatorcontrib>Devereaux, L.</creatorcontrib><creatorcontrib>Thompson, A.</creatorcontrib><creatorcontrib>Scarratt, L.</creatorcontrib><creatorcontrib>Johnson, J.</creatorcontrib><creatorcontrib>Rothwell, J.</creatorcontrib><creatorcontrib>Wardle, H.</creatorcontrib><creatorcontrib>Pelluri, S.</creatorcontrib><creatorcontrib>Scott, C.</creatorcontrib><creatorcontrib>Taylor, J.A.</creatorcontrib><creatorcontrib>Williams, S.</creatorcontrib><creatorcontrib>Caddy, S.</creatorcontrib><creatorcontrib>Buckhorn, K.</creatorcontrib><creatorcontrib>Middleton, K.</creatorcontrib><creatorcontrib>Proctor, C.</creatorcontrib><creatorcontrib>Cresswell, J.</creatorcontrib><creatorcontrib>Chilvers, A.</creatorcontrib><creatorcontrib>Cain, M.</creatorcontrib><creatorcontrib>Watson, D.</creatorcontrib><creatorcontrib>Bradfield, S.</creatorcontrib><creatorcontrib>Gregory, H.</creatorcontrib><creatorcontrib>Drakeley, S.</creatorcontrib><creatorcontrib>Davies, J.A.</creatorcontrib><creatorcontrib>Williamson, L.</creatorcontrib><creatorcontrib>Hill, P.</creatorcontrib><creatorcontrib>Sinclair, A.</creatorcontrib><creatorcontrib>Holbrook, B.</creatorcontrib><creatorcontrib>Vankoutrik, L.</creatorcontrib><creatorcontrib>Fossey, G.</creatorcontrib><creatorcontrib>Richards, A.</creatorcontrib><creatorcontrib>Henderson, A.</creatorcontrib><creatorcontrib>Fennelly, R.</creatorcontrib><creatorcontrib>Ames, K.</creatorcontrib><creatorcontrib>Beesley, K.</creatorcontrib><creatorcontrib>Rennie, K.</creatorcontrib><creatorcontrib>Porter, T.</creatorcontrib><creatorcontrib>Gipson, A.</creatorcontrib><creatorcontrib>Piper, L.</creatorcontrib><creatorcontrib>Chrisopoulou, A.</creatorcontrib><creatorcontrib>Slevin, K.</creatorcontrib><creatorcontrib>Whetton, K.</creatorcontrib><creatorcontrib>Delves, G.</creatorcontrib><creatorcontrib>Day, A.</creatorcontrib><creatorcontrib>Bankole, T.</creatorcontrib><creatorcontrib>Broadhead, S.</creatorcontrib><creatorcontrib>Oblak, M.</creatorcontrib><creatorcontrib>Donkov, I.</creatorcontrib><creatorcontrib>Culmsee, C.</creatorcontrib><creatorcontrib>Menzies, A.H.</creatorcontrib><creatorcontrib>Jannapureddy, R.</creatorcontrib><creatorcontrib>Kelkar, A.</creatorcontrib><creatorcontrib>Longhurst, S.</creatorcontrib><creatorcontrib>Worth, C.</creatorcontrib><creatorcontrib>Mzazi, S.</creatorcontrib><creatorcontrib>Poile, C.</creatorcontrib><creatorcontrib>Cook, A.</creatorcontrib><creatorcontrib>Brar, N.</creatorcontrib><creatorcontrib>DETECT II trial collaborators</creatorcontrib><title>Exploring patients’ experience and perception of being diagnosed with bladder cancer: a mixed‐methods approach</title><title>BJU international</title><addtitle>BJU Int</addtitle><description>Objective
To determine patient experience and perception following a diagnosis of non‐muscle‐invasive bladder cancer (NMIBC).
Patient and methods
Patients were part of a prospective multicentre observational study recruiting patients with NMIBC for a urine biomarker study (DETECT II; ClinicalTrials.gov: NCT02781428). A mixed‐methods approach comprising: (i) the Brief Illness Perception Questionnaire (Brief‐IPQ) and (ii) semi‐structured interviews to explore patients’ experience of having haematuria, and initial and subsequent experience with a NMIBC diagnosis. Both assessments were completed at 6 months after NMIBC diagnosis.
Results
A total of 213 patients completed the Brief‐IPQ. Patients felt that they had minimal symptoms (median [interquartile range, IQR] score 2 [0–5]) and were not particularly affected emotionally (median [IQR] score 3 [1–6]) with a minimal effect to their daily life (median [IQR] score 2 [0–5]). However, they remained concerned about their cancer diagnosis (median [IQR] score 5 [3–8]) and felt that they had no personal control over the cancer (median [IQR] score 2 [2–5]) and believed that their illness would affect them for some time (median [IQR] score 6 [3–10]). A significant association with a lower personal control of the disease (P < 0.05) and a poorer understanding of the management of NMIBC (P < 0.05) was seen in patients aged >70 years. Many patients were uncertain about the cause of bladder cancer. Qualitative analysis found that at initial presentation of haematuria, most patients were not aware of the risk of bladder cancer. Patients were most anxious and psychologically affected between the interval of cystoscopy diagnosis and transurethral resection of bladder tumour (TURBT). Following TURBT, most patients were positive about their cancer prognosis.
Conclusion
Patients with NMIBC have a poor perception of disease control and believe that their disease will continue over a prolonged period of time. This is particularly more pertinent in the elderly. Patients are most psychologically affected during the interval between cancer diagnosis following cystoscopy and TURBT. Health awareness about bladder cancer remained poor with a significant number of patients unaware of the causes of bladder cancer. Psychological support and prompt TURBT following bladder cancer diagnosis would help improve the mental health of patients with NMIBC.</description><subject>Aged</subject><subject>Aged, 80 and over</subject><subject>Attitude to Health</subject><subject>Bladder cancer</subject><subject>BladderCancer</subject><subject>blcsm</subject><subject>Cancer</subject><subject>Cystoscopy</subject><subject>Diagnosis</subject><subject>Disease control</subject><subject>Female</subject><subject>Follow-Up Studies</subject><subject>Geriatrics</subject><subject>Hematuria</subject><subject>Humans</subject><subject>interview</subject><subject>Invasiveness</subject><subject>Male</subject><subject>Medical diagnosis</subject><subject>Medical prognosis</subject><subject>Mixed methods research</subject><subject>patient reported outcome measure</subject><subject>Patients</subject><subject>Perception</subject><subject>Prospective Studies</subject><subject>qualitative</subject><subject>Quality of Life</subject><subject>questionnaires</subject><subject>Surveys and Questionnaires</subject><subject>Trial</subject><subject>Tumors</subject><subject>Urinary Bladder Neoplasms - diagnosis</subject><subject>Urinary Bladder Neoplasms - psychology</subject><issn>1464-4096</issn><issn>1464-410X</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2020</creationdate><recordtype>article</recordtype><sourceid>24P</sourceid><sourceid>WIN</sourceid><sourceid>EIF</sourceid><recordid>eNp1kcFuFSEUhonR2Fpd-AKGxI0ubgsDDODCRJtqNU3c2MQdYeDMvdzMDCPM2NtdH8Gtr9cnkdvbNmoiGzjwnZ__5EfoOSWHtKyjZj0fUkGIeoD2Ka_5glPy7eHdmeh6Dz3JeU1IuajFY7THqJZCML2P0slm7GIKwxKPdgowTPn66heGzQipVA6wHTwuhYNxCnHAscUNbHEf7HKIGTy-CNMKN531HhJ2tjSlN9jiPmzAX1_97GFaRZ-xHccUrVs9RY9a22V4drsfoPMPJ1-PTxdnXz5-On53tnCcM7WQUjDpwFWCO91wxrWSvJWtqnTFFePKMSm05rziwgpdgaWNAFs1RHunrGYH6O1Od5ybHrwrsyXbmTGF3qZLE20wf78MYWWW8YeRjCpGaBF4dSuQ4vcZ8mT6kB10nR0gztlUrHxey1pv0Zf_oOs4p6GMVyhdE1Lcq0K93lEuxZwTtPdmKDHbJE1J0twkWdgXf7q_J--iK8DRDrgIHVz-X8m8_3y-k_wNQBOq7A</recordid><startdate>202005</startdate><enddate>202005</enddate><creator>Tan, Wei Shen</creator><creator>Teo, Chin Hai</creator><creator>Feber, Andrew</creator><creator>Sarpong, 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Inc</general><scope>24P</scope><scope>WIN</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7QP</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0002-6119-4043</orcidid></search><sort><creationdate>202005</creationdate><title>Exploring patients’ experience and perception of being diagnosed with bladder cancer: a mixed‐methods approach</title><author>Tan, Wei Shen ; Teo, Chin Hai ; Feber, Andrew ; Sarpong, Rachael ; Brew‐Graves, Chris ; Ng, Chirk Jenn ; Baker, H. ; Whotton, N. ; Pearson, S. ; Hatton, J. ; Newton, M. ; Green, K. ; Rogers, M. ; Dann, A. ; Mills, R. ; Knight, H. ; Rane, A. ; Thomas, S. ; Reyner, S. ; Ridgway, S. ; Mccormick, J. ; Clark, M. ; Collins, G. ; Bowen, G. ; Srirangam, S. ; Cocks, S. ; Main, C. ; Grant, A. ; Lomas, C. ; Baird, Y. ; Moore, S. ; Margalef, J. ; Chadbourn, I. ; Clitheroe, P. ; Hodgkinson, S. ; Haydock, H. ; Natale, S. ; Smith, S. ; Smith, K. ; Royle, L. ; Madine, J. ; MacLean, K. ; Walsh, J. ; Power, A. ; Devereaux, L. ; Thompson, A. ; Scarratt, L. ; Johnson, J. ; Rothwell, J. ; Wardle, H. ; Pelluri, S. ; Scott, C. ; Taylor, J.A. ; Williams, S. ; Caddy, S. ; Buckhorn, K. ; Middleton, K. ; Proctor, C. ; Cresswell, J. ; Chilvers, A. ; Cain, M. ; Watson, D. ; Bradfield, S. ; Gregory, H. ; Drakeley, S. ; Davies, J.A. ; Williamson, L. ; Hill, P. ; Sinclair, A. ; Holbrook, B. ; Vankoutrik, L. ; Fossey, G. ; Richards, A. ; Henderson, A. ; Fennelly, R. ; Ames, K. ; Beesley, K. ; Rennie, K. ; Porter, T. ; Gipson, A. ; Piper, L. ; Chrisopoulou, A. ; Slevin, K. ; Whetton, K. ; Delves, G. ; Day, A. ; Bankole, T. ; Broadhead, S. ; Oblak, M. ; Donkov, I. ; Culmsee, C. ; Menzies, A.H. ; Jannapureddy, R. ; Kelkar, A. ; Longhurst, S. ; Worth, C. ; Mzazi, S. ; Poile, C. ; Cook, A. ; Brar, N.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4438-77537cec254c9b4349874f7f829248348c3759944245a592ea1b5ea2b09dc8a93</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2020</creationdate><topic>Aged</topic><topic>Aged, 80 and over</topic><topic>Attitude to Health</topic><topic>Bladder cancer</topic><topic>BladderCancer</topic><topic>blcsm</topic><topic>Cancer</topic><topic>Cystoscopy</topic><topic>Diagnosis</topic><topic>Disease control</topic><topic>Female</topic><topic>Follow-Up Studies</topic><topic>Geriatrics</topic><topic>Hematuria</topic><topic>Humans</topic><topic>interview</topic><topic>Invasiveness</topic><topic>Male</topic><topic>Medical diagnosis</topic><topic>Medical prognosis</topic><topic>Mixed methods research</topic><topic>patient reported outcome measure</topic><topic>Patients</topic><topic>Perception</topic><topic>Prospective Studies</topic><topic>qualitative</topic><topic>Quality of Life</topic><topic>questionnaires</topic><topic>Surveys and Questionnaires</topic><topic>Trial</topic><topic>Tumors</topic><topic>Urinary Bladder Neoplasms - diagnosis</topic><topic>Urinary Bladder Neoplasms - psychology</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Tan, Wei Shen</creatorcontrib><creatorcontrib>Teo, Chin Hai</creatorcontrib><creatorcontrib>Feber, Andrew</creatorcontrib><creatorcontrib>Sarpong, Rachael</creatorcontrib><creatorcontrib>Brew‐Graves, Chris</creatorcontrib><creatorcontrib>Ng, Chirk Jenn</creatorcontrib><creatorcontrib>Baker, H.</creatorcontrib><creatorcontrib>Whotton, N.</creatorcontrib><creatorcontrib>Pearson, S.</creatorcontrib><creatorcontrib>Hatton, J.</creatorcontrib><creatorcontrib>Newton, M.</creatorcontrib><creatorcontrib>Green, K.</creatorcontrib><creatorcontrib>Rogers, M.</creatorcontrib><creatorcontrib>Dann, A.</creatorcontrib><creatorcontrib>Mills, R.</creatorcontrib><creatorcontrib>Knight, H.</creatorcontrib><creatorcontrib>Rane, A.</creatorcontrib><creatorcontrib>Thomas, S.</creatorcontrib><creatorcontrib>Reyner, S.</creatorcontrib><creatorcontrib>Ridgway, S.</creatorcontrib><creatorcontrib>Mccormick, J.</creatorcontrib><creatorcontrib>Clark, M.</creatorcontrib><creatorcontrib>Collins, G.</creatorcontrib><creatorcontrib>Bowen, G.</creatorcontrib><creatorcontrib>Srirangam, S.</creatorcontrib><creatorcontrib>Cocks, S.</creatorcontrib><creatorcontrib>Main, C.</creatorcontrib><creatorcontrib>Grant, A.</creatorcontrib><creatorcontrib>Lomas, C.</creatorcontrib><creatorcontrib>Baird, Y.</creatorcontrib><creatorcontrib>Moore, S.</creatorcontrib><creatorcontrib>Margalef, J.</creatorcontrib><creatorcontrib>Chadbourn, I.</creatorcontrib><creatorcontrib>Clitheroe, P.</creatorcontrib><creatorcontrib>Hodgkinson, S.</creatorcontrib><creatorcontrib>Haydock, H.</creatorcontrib><creatorcontrib>Natale, 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J.</creatorcontrib><creatorcontrib>Chilvers, A.</creatorcontrib><creatorcontrib>Cain, M.</creatorcontrib><creatorcontrib>Watson, D.</creatorcontrib><creatorcontrib>Bradfield, S.</creatorcontrib><creatorcontrib>Gregory, H.</creatorcontrib><creatorcontrib>Drakeley, S.</creatorcontrib><creatorcontrib>Davies, J.A.</creatorcontrib><creatorcontrib>Williamson, L.</creatorcontrib><creatorcontrib>Hill, P.</creatorcontrib><creatorcontrib>Sinclair, A.</creatorcontrib><creatorcontrib>Holbrook, B.</creatorcontrib><creatorcontrib>Vankoutrik, L.</creatorcontrib><creatorcontrib>Fossey, G.</creatorcontrib><creatorcontrib>Richards, A.</creatorcontrib><creatorcontrib>Henderson, A.</creatorcontrib><creatorcontrib>Fennelly, R.</creatorcontrib><creatorcontrib>Ames, K.</creatorcontrib><creatorcontrib>Beesley, K.</creatorcontrib><creatorcontrib>Rennie, K.</creatorcontrib><creatorcontrib>Porter, T.</creatorcontrib><creatorcontrib>Gipson, A.</creatorcontrib><creatorcontrib>Piper, L.</creatorcontrib><creatorcontrib>Chrisopoulou, A.</creatorcontrib><creatorcontrib>Slevin, K.</creatorcontrib><creatorcontrib>Whetton, K.</creatorcontrib><creatorcontrib>Delves, G.</creatorcontrib><creatorcontrib>Day, A.</creatorcontrib><creatorcontrib>Bankole, T.</creatorcontrib><creatorcontrib>Broadhead, S.</creatorcontrib><creatorcontrib>Oblak, M.</creatorcontrib><creatorcontrib>Donkov, I.</creatorcontrib><creatorcontrib>Culmsee, C.</creatorcontrib><creatorcontrib>Menzies, A.H.</creatorcontrib><creatorcontrib>Jannapureddy, R.</creatorcontrib><creatorcontrib>Kelkar, A.</creatorcontrib><creatorcontrib>Longhurst, S.</creatorcontrib><creatorcontrib>Worth, C.</creatorcontrib><creatorcontrib>Mzazi, S.</creatorcontrib><creatorcontrib>Poile, C.</creatorcontrib><creatorcontrib>Cook, A.</creatorcontrib><creatorcontrib>Brar, N.</creatorcontrib><creatorcontrib>DETECT II trial collaborators</creatorcontrib><collection>Wiley Online Library Open Access</collection><collection>Wiley Free Content</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Calcium & Calcified Tissue Abstracts</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>BJU international</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Tan, Wei Shen</au><au>Teo, Chin Hai</au><au>Feber, Andrew</au><au>Sarpong, Rachael</au><au>Brew‐Graves, Chris</au><au>Ng, Chirk Jenn</au><au>Baker, H.</au><au>Whotton, N.</au><au>Pearson, S.</au><au>Hatton, J.</au><au>Newton, M.</au><au>Green, K.</au><au>Rogers, M.</au><au>Dann, A.</au><au>Mills, R.</au><au>Knight, H.</au><au>Rane, A.</au><au>Thomas, S.</au><au>Reyner, S.</au><au>Ridgway, S.</au><au>Mccormick, J.</au><au>Clark, M.</au><au>Collins, G.</au><au>Bowen, G.</au><au>Srirangam, S.</au><au>Cocks, S.</au><au>Main, C.</au><au>Grant, A.</au><au>Lomas, C.</au><au>Baird, Y.</au><au>Moore, S.</au><au>Margalef, J.</au><au>Chadbourn, I.</au><au>Clitheroe, P.</au><au>Hodgkinson, S.</au><au>Haydock, H.</au><au>Natale, S.</au><au>Smith, S.</au><au>Smith, K.</au><au>Royle, L.</au><au>Madine, J.</au><au>MacLean, K.</au><au>Walsh, J.</au><au>Power, A.</au><au>Devereaux, L.</au><au>Thompson, A.</au><au>Scarratt, L.</au><au>Johnson, J.</au><au>Rothwell, J.</au><au>Wardle, H.</au><au>Pelluri, S.</au><au>Scott, C.</au><au>Taylor, J.A.</au><au>Williams, S.</au><au>Caddy, S.</au><au>Buckhorn, K.</au><au>Middleton, K.</au><au>Proctor, C.</au><au>Cresswell, J.</au><au>Chilvers, A.</au><au>Cain, M.</au><au>Watson, D.</au><au>Bradfield, S.</au><au>Gregory, H.</au><au>Drakeley, S.</au><au>Davies, J.A.</au><au>Williamson, L.</au><au>Hill, P.</au><au>Sinclair, A.</au><au>Holbrook, B.</au><au>Vankoutrik, L.</au><au>Fossey, G.</au><au>Richards, A.</au><au>Henderson, A.</au><au>Fennelly, R.</au><au>Ames, K.</au><au>Beesley, K.</au><au>Rennie, K.</au><au>Porter, T.</au><au>Gipson, A.</au><au>Piper, L.</au><au>Chrisopoulou, A.</au><au>Slevin, K.</au><au>Whetton, K.</au><au>Delves, G.</au><au>Day, A.</au><au>Bankole, T.</au><au>Broadhead, S.</au><au>Oblak, M.</au><au>Donkov, I.</au><au>Culmsee, C.</au><au>Menzies, A.H.</au><au>Jannapureddy, R.</au><au>Kelkar, A.</au><au>Longhurst, S.</au><au>Worth, C.</au><au>Mzazi, S.</au><au>Poile, C.</au><au>Cook, A.</au><au>Brar, N.</au><aucorp>DETECT II trial collaborators</aucorp><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Exploring patients’ experience and perception of being diagnosed with bladder cancer: a mixed‐methods approach</atitle><jtitle>BJU international</jtitle><addtitle>BJU Int</addtitle><date>2020-05</date><risdate>2020</risdate><volume>125</volume><issue>5</issue><spage>669</spage><epage>678</epage><pages>669-678</pages><issn>1464-4096</issn><eissn>1464-410X</eissn><abstract>Objective
To determine patient experience and perception following a diagnosis of non‐muscle‐invasive bladder cancer (NMIBC).
Patient and methods
Patients were part of a prospective multicentre observational study recruiting patients with NMIBC for a urine biomarker study (DETECT II; ClinicalTrials.gov: NCT02781428). A mixed‐methods approach comprising: (i) the Brief Illness Perception Questionnaire (Brief‐IPQ) and (ii) semi‐structured interviews to explore patients’ experience of having haematuria, and initial and subsequent experience with a NMIBC diagnosis. Both assessments were completed at 6 months after NMIBC diagnosis.
Results
A total of 213 patients completed the Brief‐IPQ. Patients felt that they had minimal symptoms (median [interquartile range, IQR] score 2 [0–5]) and were not particularly affected emotionally (median [IQR] score 3 [1–6]) with a minimal effect to their daily life (median [IQR] score 2 [0–5]). However, they remained concerned about their cancer diagnosis (median [IQR] score 5 [3–8]) and felt that they had no personal control over the cancer (median [IQR] score 2 [2–5]) and believed that their illness would affect them for some time (median [IQR] score 6 [3–10]). A significant association with a lower personal control of the disease (P < 0.05) and a poorer understanding of the management of NMIBC (P < 0.05) was seen in patients aged >70 years. Many patients were uncertain about the cause of bladder cancer. Qualitative analysis found that at initial presentation of haematuria, most patients were not aware of the risk of bladder cancer. Patients were most anxious and psychologically affected between the interval of cystoscopy diagnosis and transurethral resection of bladder tumour (TURBT). Following TURBT, most patients were positive about their cancer prognosis.
Conclusion
Patients with NMIBC have a poor perception of disease control and believe that their disease will continue over a prolonged period of time. This is particularly more pertinent in the elderly. Patients are most psychologically affected during the interval between cancer diagnosis following cystoscopy and TURBT. Health awareness about bladder cancer remained poor with a significant number of patients unaware of the causes of bladder cancer. Psychological support and prompt TURBT following bladder cancer diagnosis would help improve the mental health of patients with NMIBC.</abstract><cop>England</cop><pub>Wiley Subscription Services, Inc</pub><pmid>31975539</pmid><doi>10.1111/bju.15008</doi><tpages>10</tpages><orcidid>https://orcid.org/0000-0002-6119-4043</orcidid><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 1464-4096 |
| ispartof | BJU international, 2020-05, Vol.125 (5), p.669-678 |
| issn | 1464-4096 1464-410X |
| language | eng |
| recordid | cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_7318301 |
| source | MEDLINE; Wiley Online Library Journals Frontfile Complete |
| subjects | Aged Aged, 80 and over Attitude to Health Bladder cancer BladderCancer blcsm Cancer Cystoscopy Diagnosis Disease control Female Follow-Up Studies Geriatrics Hematuria Humans interview Invasiveness Male Medical diagnosis Medical prognosis Mixed methods research patient reported outcome measure Patients Perception Prospective Studies qualitative Quality of Life questionnaires Surveys and Questionnaires Trial Tumors Urinary Bladder Neoplasms - diagnosis Urinary Bladder Neoplasms - psychology |
| title | Exploring patients’ experience and perception of being diagnosed with bladder cancer: a mixed‐methods approach |
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