A patient-centered approach to developing a comprehensive symptom and quality of life assessment of anal incontinence

Avery, Kerry N.L.; Cotterill, Nikki; Norton, Christine; Abrams, Paul; Donovan, Jenny L.

Abstract

PURPOSE: This study was designed to identify question items required for a comprehensive symptom and quality of life assessment for individuals with anal incontinence. METHODS: Three substudies addressed the goals: 1) convenience sample of clinical experts was asked to identify symptom items essential to characterize anal incontinence; 2) free-text comments by patients involved in a treatment intervention trial (Norton et al., Gastroenterology 2003;125:1320-9) underwent content analysis to highlight themes regarding life restriction caused by anal incontinence; and 3) qualitative interviews were conducted by using a grounded theory approach with symptomatic patients to identify issues causing impact on quality of life. Terminology for this condition was explored in the interviews to identify the most acceptable phraseology. Finally, the capability of existing anal incontinence questionnaires to capture and assess issues identified as important by patients was assessed. RESULTS: Seven clinical experts reached consensus that assessment should include the type, frequency and severity of incontinence, whether passive or associated with urgency, ability to delay and discriminate stool type, and "normal" bowel pattern. A total of 284 patients' comments were reviewed and 31 patients were interviewed, highlighting five key issues: unpredictability, toilet location, coping strategies, embarrassment, and social activity restriction. Assessment of available questionnaires for their inclusion of these themes indicates that none currently captures comprehensive information on these issues identified as important by patients. CONCLUSIONS: Fundamental issues as identified by patients are not currently represented in one overall comprehensive measure. The mixed method approach identified key issues to be assessed to ensure accurate symptomatic assessment and a comprehensive assessment of quality of life impact associated with anal incontinence. © 2007 American Society of Colon and Rectal Surgeons.

• Journal Article Type: Article
• Acceptance Date: Oct 1, 2007
• Online Publication Date: Nov 15, 2007
• Publication Date: Jan 1, 2008
• Deposit Date: Jul 20, 2018
• Journal: Diseases of the Colon and Rectum
• Print ISSN: 0012-3706
• Electronic ISSN: 1530-0358
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• Volume: 51
• Issue: 1
• Pages: 82-87
• DOI: https://doi.org/10.1007/s10350-007-9069-3
• Keywords: faecal incontinence, quality of life, qualitative research, questionnaires, terminology, outcome assessment, patient-centered assessment
• Public URL: https://uwe-repository.worktribe.com/output/1015397
• Publisher URL: https://doi.org/10.1007/s10350-007-9069-3
• Additional Information: Additional Information : The final publication is available at Springer via https://doi.org/10.1007/s10350-007-9069-3
• Contract Date: Jul 20, 2018