Introduction There is a growing need to understand the experience of irritable bowel syndrome (IBS) and factors contributing to its disease burden, from the patient–s perspective. Retrospective end-of-day questionnaires are currently used to assess abdominal pain and other gastrointestinal symptoms in IBS. However, these assessments are influenced by recall bias and psychosocial factors. The Experience Sampling Method (ESM) may overcome these limitations by assessing symptoms randomly and repeatedly in the natural state and environment of the subject. An explorative study from our group demonstrated more accurate measurements of IBS symptom patterns when comparing ESM to retrospective questionnaires. Aim of the current study was to develop a short and balanced patient-reported outcome measure for symptom assessment using ESM based on focus group interviews.
Method Focus group interviews were conducted to obtain patient input in order to develop an ESM questionnaire, to be administered randomly ten times a day. Participants, meeting Rome III criteria for IBS, were asked to suggest every item they considered relevant. Additionally, subjects were instructed to specifically criticise the ESM questionnaire that was used in our previously performed pilot study. After reaching saturation, the identified items were discussed by local experts in the field of neurogastroenterology in order to develop the final ESM questionnaire.
Results Four focus group meetings were organised with 4–8 participants attending each session (76.5% female; 54 ± 12.6 years). These revealed seven essential categories: abdominal pain, defecation, provoking and relieving factors, dietary factors, other gastrointestinal symptoms, mood and psychological factors, comorbidities and medication use. In total, the participants disclosed 43 specific questions. Experts reduced these to 25 in order to decrease the time and burden associated with completing the questionnaire.
Conclusion In this study, a patient-reported outcome measure, suitable for symptom assessment, including possible influencing daily life factors in IBS, was developed. This measure is to be validated in a large, heterogeneous IBS population in order to implement it as a symptom assessment tool to evaluate therapeutic responses. Furthermore, ESM offers a suitable approach to identify daily life triggers for symptoms with potential implications for individualised therapeutic strategies.
Disclosure of interest None Declared.
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