Abstract
BACKGROUND: In large population-based studies, there is a lack of existing survey instruments designed to ascertain menstrual cycle characteristics and androgen excess status including hirsutism, alopecia, and acne. Our objective was to cognitively test a survey instrument for self-assessed menstrual cycle characteristics androgen excess. METHODS: Questions to assess menstrual characteristics and health were designed using existing surveys and clinical experience. Pictorial self-assessment tools for androgen excess were also developed with an experienced medical illustrator to include the modified Ferrimen-Galway, acne and androgenic alopecia. These were combined into an online survey instrument using REDCap. Of the 219 questions, 120 were selected for cognitive testing to assess question comprehension in a population representative of the future study population. RESULTS: Cognitive testing identified questions and concepts not easily comprehended, recalled, or had problematic response choices. Comprehension examples included simplifying the definition for polycystic ovary syndrome and revising questions on historic menstrual regularity and bleeding duration. Recall and answer formation examples include issues with recalling waist size, beverage consumption, and interpretation of questions using symbols (> or <). The survey was revised based on feedback and subsequently used in the Ovulation and Menstruation (OM) Health Pilot study. CONCLUSION: We present a cognitively tested, novel survey instrument to assess menstrual cycle characteristics and androgen excess.