Patients’ experience of colonoscopy in the English Bowel Cancer Screening Programme

Background and study aims: Understanding patients’ experience of screening programs is crucial for service improvement. The English Bowel Cancer Screening Programme (BCSP) aims to achieve this by sending out questionnaires to all patients who undergo a colonoscopy following an abnormal fecal occult blood test result. This study used the questionnaire data to report the experiences of these patients.

Patients and methods: Data on patients who underwent colonoscopy between 2011 and 2012 were extracted from the BCSP database. Descriptive statistics were used to summarize key questionnaire items relating to informed choice, psychological wellbeing, physical experience, and after-effects. Multilevel logistic regression was used to test for associations with variables of interest: sex, age, socioeconomic status, colonoscopy results, and screening center performance (adenoma detection rate, cecal intubation rate, proportion of colonoscopies involving sedation).

Results: Data from 50 858 patients (79.3 % of those eligible) were analyzed. A majority reported a positive experience on items relating to informed choice (e. g. 95.7 % felt they understood the risks) and psychological wellbeing (e. g. 98.3 % felt they were treated with respect). However, an appreciable proportion experienced unexpected test discomfort (21.0 %) or pain at home (14.8 %). There were few notable demographic differences, although women were more likely than men to experience unexpected discomfort (25.1 % vs. 18.0 %; P < 0.01) and pain at home (18.2 % vs. 12.3 %; P < 0.01). No associations with center-level variables were apparent.

Conclusions: Colonoscopy experience was generally positive, suggesting high satisfaction with the BCSP. Reported pain and unexpected discomfort were more negative than most other outcomes (particularly for women); measures to improve this should be considered.

• References

• 1 Hewitson P, Glasziou P, Irwig L et al. Screening for colorectal cancer using the faecal occult blood test, Hemoccult. Cochrane Database Syst Rev 2007; CD001216
• 2 Logan RFA, Patnick J, Nickerson C et al. Outcomes of the Bowel Cancer Screening Programme (BCSP) in England after the first 1 million tests. Gut 2012; 61: 1439-1446
• 3 Lee TJW, Rutter MD, Blanks RG et al. Colonoscopy quality measures: experience from the NHS Bowel Cancer Screening Programme. Gut 2012; 61: 1050-1057
• 4 Weldring T, Smith SMS. Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs). Health Serv Insights 2013; 6: 61-68
• 5 Llanwarne NR, Abel GA, Elliott MN et al. Relationship between clinical quality and patient experience: analysis of data from the English Quality and Outcomes Framework and the National GP Patient Survey. Ann Fam Med 2013; 11: 467-472
• 6 Black N, Varaganum M, Hutchings A. Relationship between patient reported experience (PREMs) and patient reported outcomes (PROMs) in elective surgery. BMJ Qual Saf 2014; 23: 534-542
• 7 Lagha E, Noble A, Smith A et al. Patient Reported Experience Measures (PREMs) in chronic heart failure. J R Coll Physicians Edinb 2012; 42: 301-305
• 8 DH/NHS Finance, Performance and Operations. The operating framework for the NHS in England 2012/13. Department of Health; 2011
• 9 Geraghty J, Butler P, Seaman H et al. Optimising faecal occult blood screening: retrospective analysis of NHS Bowel Cancer Screening data to improve the screening algorithm. Br J Cancer 2014; 111: 2156-2162
• 10 National Patient Safety Agency. Information sheets and consent forms. Guidance for researchers and reviewers 2011. Available from: http://www.hra.nhs.uk/documents/2013/09/information-sheet-and-consent-form-guidance.pdf Accessed 2015 May 13. (Information now available from: http://www.hra-decisiontools.org.uk/consent/docs/Consent%20and%20PIS%20Guidance%20Mar3rd2014.pdf)
• 11 NHS Health Research Authority. Research requiring NHS R&D review but not ethical review. Available from: http://www.hra.nhs.uk/resources/before-you-apply/research-requiring-nhs-rd-review-but-not-ethical-review/ Accessed 2015 May 13
• 12 Joint Advisory Group on GI Endoscopy. Accreditation of screening colonoscopists. BCSP guidelines 2013. Available from: http://www.saas.nhs.uk/documents/Accreditation%20of%20screening%20colonoscopists%20guidelines%20final_June_2013.pdf Accessed 2015 May 13
• 13 McLachlan S-A, Clements A, Austoker J. Patients’ experiences and reported barriers to colonoscopy in the screening context – a systematic review of the literature. Patient Educ Couns 2011; 86: 137-146
• 14 National Screening Committee. Criteria for appraising the viability, effectiveness and appropriateness of a screening programme. 2015 Available from: https://www.gov.uk/government/publications/evidence-review-criteria-national-screening-programmes/criteria-for-appraising-the-viability-effectiveness-and-appropriateness-of-a-screening-programme Accessed 2015 May 13
• 15 UK Data Service Census Support. GeoConvert. Available from: http://geoconvert.mimas.ac.uk Accessed 2015 May 13
• 16 Noble M, Mclennan D, Wilkinson K et al. The English Indices of Deprivation 2007. London: 2008 Available from: http://geoconvert.mimas.ac.uk/help/imd-2007-manual.pdf Accessed 2015 May 13
• 17 Van Buuren S, Groothuis-Oudshoorn K. mice: Multivariate Imputation by Chained Equations in R. J Stat Softw 2011; 45: 1-67
• 18 Steele RJC, Kostourou I, McClements P et al. Effect of repeated invitations on uptake of colorectal cancer screening using faecal occult blood testing: analysis of prevalence and incidence screening. BMJ 2010; 341: c5531
• 19 Sterne JA, White IR, Carlin JB et al. Multiple imputation for missing data in epidemiological and clinical research: potential and pitfalls. BMJ 2009; 338: b2393
• 20 Rubin DB. Multiple imputation for nonresponse in surveys. New York: J. Wiley & Sons; 1987
• 21 Francis R. Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry – Executive Summary. 2013 Accessed 2015 May 13. Available from: http://www.midstaffspublicinquiry.com/report
• 22 Sint Nicolaas J, de Jonge V, Korfage IJ et al. Benchmarking patient experiences in colonoscopy using the Global Rating Scale. Endoscopy 2012; 44: 462-472
• 23 Sint Nicolaas J, de Jonge V, de Man RA et al. The Global Rating Scale in clinical practice: a comprehensive quality assurance programme for endoscopy departments. Dig Liver Dis 2012; 44: 919-924
• 24 Denters MJ, Deutekom M, Bossuyt PM et al. Patient burden of colonoscopy after positive fecal immunochemical testing for colorectal cancer screening. Endoscopy 2013; 45: 342-349
• 25 Marteau TM, Dormandy E, Michie S. A measure of informed choice. Health Expect 2001; 4: 99-108
• 26 Smith SK, Trevena L, Simpson JM et al. Randomised controlled trial of a decision aid to support informed choice about bowel cancer screening among adults with low education. BMJ 2010; 341: c5370
• 27 King’s Health Partners Integrated Cancer Centre. Information about NHS cancer screening programmes. Consultation report. 2012 http://www.informedchoiceaboutcancerscreening.org/wp-content/uploads/2012/12/Report-of-consultation-on-information-about-cancer-screening-programmes-13th-December-2012_ls.pdf Accessed 2015 May 13
• 28 O’Connor A, O’Brien-Pallas L editors. Decisional conflict. In: Nursing diagnosis and intervention. Toronto: Mosby; 1989: 486-496
• 29 Schwartz PH, Edenberg E, Barrett PR et al. Patient understanding of benefits, risks, and alternatives to screening colonoscopy. Fam Med 2013; 45: 83-89
• 30 Ristikankare M, Hartikainen J, Heikkinen M et al. The effects of gender and age on the colonoscopic examination. J Clin Gastroenterol 2001; 32: 69-75
• 31 Elphick DA, Donnelly MT, Smith KS et al. Factors associated with abdominal discomfort during colonoscopy: a prospective analysis. Eur J Gastroenterol Hepatol 2009; 21: 1076-1082
• 32 Saunders BP, Fukumoto M, Halligan S et al. Why is colonoscopy more difficult in women?. Gastrointest Endosc 1996; 43: 124-126
• 33 Feine JS, Bushnell MC, Miron D et al. Sex differences in the perception of noxious heat stimuli. Pain 1991; 44: 255-262
• 34 Lasch H, Castell DO, Castell JA. Evidence for diminished visceral pain with aging: studies using graded intraesophageal balloon distension. Am J Physiol 1997; 272: G1-G3
• 35 Hewitson P, Skew A, Graham C et al. People with limiting long-term conditions report poorer experiences and more problems with hospital care. BMC Health Serv Res 2014; 14: 33
• 36 Waller J, Macedo A, von Wagner C et al. Communication about colorectal cancer screening in Britain: public preferences for an expert recommendation. Br J Cancer 2012; 107: 1938-1943
• 37 Ristvedt SL, McFarland EG, Weinstock LB et al. Patient preferences for CT colonography, conventional colonoscopy, and bowel preparation. Am J Gastroenterol 2003; 98: 578-585
• 38 von Wagner C, Smith S, Halligan S et al. Patient acceptability of CT colonography compared with double contrast barium enema: results from a multicentre randomised controlled trial of symptomatic patients. Eur Radiol 2011; 21: 2046-2055
• 39 Denters MJ, Deutekom M, Derkx B et al. Patient satisfaction with the colonoscopy procedure: endoscopists overestimate the importance of adverse physical symptoms. Frontline Gastroenterol 2012; 3: 130-136
• 40 Baudet JS, Aguirre-Jaime A. The sedation increases the acceptance of repeat colonoscopies. Eur J Gastroenterol Hepatol 2012; 24: 775-780
• 41 Brown S, Bevan R, Rubin G et al. Patient-derived measures of GI endoscopy: a meta-narrative review of the literature. Gastrointest Endosc 2015; 81: 1130-1140
• 42 Yanai H, Schushan-Eisen I, Neuman S et al. Patient satisfaction with endoscopy measurement and assessment. Dig Dis 2007; 26: 75-79