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A Patient-Centered Approach to Developing a Comprehensive Symptom and Quality of Life Assessment of Anal Incontinence

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.

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Acknowledgments

The authors thank the patients who participated in this study, the clinical experts involved, and the staff at St. Mark’s Hospital and Southmead Hospital for their assistance with recruitment.

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Authors

Corresponding author

Correspondence to Nikki Cotterill B.Sc.(Hons.), R.N..

Additional information

Presented at the meeting of the International Continence Society, Montreal, Canada, August 31 to September 2, 2005.

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Cite this article

Cotterill, N., Norton, C., Avery, K.N.L. et al. A Patient-Centered Approach to Developing a Comprehensive Symptom and Quality of Life Assessment of Anal Incontinence. Dis Colon Rectum 51, 82–87 (2008). https://doi.org/10.1007/s10350-007-9069-3

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Key words

  • Fecal incontinence
  • Quality of life
  • Qualitative research
  • Questionnaires
  • Terminology
  • Outcome assessment