Factors influencing women's participation in urogynecology research in the UK and USA

Aims To explore factors influencing willingness to participate in urogynecology trials and explore associations between demographics, quality of life score (ICIQ-SF), and willingness to participate. Methods The Bladder Clinic Questionnaire (BCQ) was developed, piloted, and validated. The BCQ and ICIQ-SF were distributed to women attending urogynecologists in tertiary referral centers in the UK and USA. The BCQ collected demographic data and data on previous involvement in research and posed eight research scenarios. Women were asked to record their willingness to participate on a Likert scale, collapsed for analysis into "any yes," "unsure," or "any no," giving a BCQ score between 0 and 16 (higher scores indicating greater willingness). Results Two hundred sixty-seven UK women and 200 US women returned completed questionnaires. Median BCQ score differed between UK and US women (11 [0-16] vs. 10 [0-16]; P = 0.004); median ICIQ score was similar (9 [0-21] vs. 9 [0-20]). ICIQ score was higher in UK women willing to participate in two scenarios: standard operation versus new operation (P = 0.007), and new operation versus new operation (P = 0.001). UK women were uniformly more willing to take part in all scenarios involving established treatments. Conclusion We identified cultural differences in willingness to participate and differences depending on type of intervention proposed which supports the growing evidence that detailed pilot work is required during planning of intervention studies.