Functional dyspepsia: Validation and results of a novel survey instrument to evaluate patient knowledge and perceptions

Background: Patients' knowledge and perceptions of functional dyspepsia (FD) may affect illness behavior and healthcare utilization. Aims: To develop, validate, and administer a survey instrument to assess symptoms, knowledge, and fears in FD patients. Methods: A 66-item questionnaire was generated. Items assessed domains of etiology, diagnosis, natural history, and fears. Face and content validity were established through expert review and a patient focus group. After validation, questionnaires were mailed to a separate group of FD patients. Responses were analyzed using scales and means. Results: For survey validation, 66 of 80 patients (83%) returned both surveys. Internal consistency was good for most scale level measures (α=0.50 to 0.90). Reliability coefficients were good for measures of symptom assessment (intraclass correlation coefficient=0.75 to 0.89) and consulting behaviors (intraclass correlation coefficient=0.76 to 0.89). After survey validation, an additional 223 (62.8%) questionnaires were returned. Misperceptions were noted in the domains of etiology, diagnosis, treatment and risks of FD. Forty-eight percent of the respondents believed FD increases the risk of developing an ulcer and 32% believed there was an increased risk of developing stomach or colon cancer. Conclusions: This novel questionnaire demonstrated good validity and reliability in FD patients, and identified significant misperceptions about the etiology, evaluation, treatment, and natural history of FD.