title: A patient-centered approach to developing a comprehensive symptom and quality of life assessment of anal incontinence.
abstract: OBJECTIVE
  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.
authors.affiliation: Bristol Urological Institute, Southmead Hospital, Westbury-on-Trym, Bristol, United Kingdom. Nikki_gardener@bui.ac.uk
authors.forename: Nikki
authors.initials: N
authors.lastname: Cotterill
authors.forename: Christine
authors.initials: C
authors.lastname: Norton
authors.forename: Kerry N L
authors.initials: KN
authors.lastname: Avery
authors.forename: Paul
authors.initials: P
authors.lastname: Abrams
authors.forename: Jenny L
authors.initials: JL
authors.lastname: Donovan
mesh_terms: D005242:Fecal Incontinence / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D018802:Patient-Centered Care; D011788:Quality of Life; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D009626:Terminology as Topic