Development of a question prompt list for women with polycystic ovary syndrome

Objective: To develop a question prompt list (QPL) for women with polycystic ovary syndrome (PCOS) and explore its acceptability and feasibility.

Design: Nationwide online survey, interviews, and clinical pilot test.

Setting: Australia.

Patient(s): Two-hundred and forty-nine women online, 18 women in interviews, and 20 women in clinics.

Intervention(s): A QPL for PCOS.

Main outcome measure(s): From survey, women's likeliness to use a QPL and priority topics; from interview, QPL user-friendliness and associated feelings; from pilot, women's QPL use, perceived helpfulness, and intended future use.

Result(s): Evidence-based guidelines and multidisciplinary experts informed the QPL development. Of 249 survey respondents, 66.7% to 68.7% reported difficulty communicating with health care providers about mood, weight management, and how PCOS affects daily life, and 85.8% indicated they were very likely to use a PCOS QPL. Women were interviewed to explore acceptability; the semistructured interviews (n = 18) revealed that the devised QPL was easy to understand, user-friendly, and encouraged information seeking and targeted question asking. The refined QPL was pilot-tested in a clinic setting to explore feasibility between 2016 and 2017: 60.0% of women asked 1 to 2 questions from the QPL, 20.0% asked several questions, and 10.0% reported the QPL helped them generate their own questions. Women agreed the QPL was helpful (95.0%) and that they would use the QPL again (90.0%).

Conclusion(s): The PCOS QPL is acceptable and feasible, and may assist women in information seeking and targeted question asking.