Development of a question prompt list for women with polycystic ovary syndrome
Article In Press
Nadia N. Khan, B.Biomed.Sc. (Hons), Amanda Vincent, M.B.B.S., B.Med.Sc. (Hons), Ph.D., Jacqueline A. Boyle, M.B.B.S., M.P.H.T.M., Ph.D., Millicent Burggraf, M.B.B.S., B.Med.Sc. (Hons), Monisha Pillay, M.B.B.S., Helena Teede, M.B.B.S., Ph.D., Melanie Gibson-Helm, Ph.D.
To develop a question prompt list (QPL) for women with polycystic ovary syndrome (PCOS) and explore its acceptability and feasibility.
Nationwide online survey, interviews, and clinical pilot test.
Two-hundred and forty-nine women online, 18 women in interviews, and 20 women in clinics.
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.
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%).
The PCOS QPL is acceptable and feasible, and may assist women in information seeking and targeted question asking.