The challenges with managing polycystic ovary syndrome: A qualitative study of women's and clinicians' experiences

Tessa Copp; Danielle M Muscat; Jolyn Hersch; Kirsten J McCaffery; Jenny Doust; Anuja Dokras; Ben W Mol; Jesse Jansen

doi:10.1016/j.pec.2021.05.038

The challenges with managing polycystic ovary syndrome: A qualitative study of women's and clinicians' experiences

Patient Educ Couns. 2022 Mar;105(3):719-725. doi: 10.1016/j.pec.2021.05.038. Epub 2021 May 29.

Authors

Tessa Copp¹, Danielle M Muscat², Jolyn Hersch², Kirsten J McCaffery², Jenny Doust³, Anuja Dokras⁴, Ben W Mol⁵, Jesse Jansen⁶

Affiliations

¹ Wiser Healthcare, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, 2006, Australia; Sydney Health Literacy Lab, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, 2006, Australia. Electronic address: tessa.copp@sydney.edu.au.
² Wiser Healthcare, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, 2006, Australia; Sydney Health Literacy Lab, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, 2006, Australia.
³ Centre for Longitudinal and Life Course Research, School of Public Health, The University of Queensland, 4006, Australia.
⁴ Penn PCOS Centre, Department of Obstetrics and Gynaecology, University of Pennsylvania, Philadelphia 19104, USA.
⁵ Department of Obstetrics and Gynaecology, Monash University, Clayton 3800, Australia.
⁶ School of Public Health and Primary Care, Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, The Netherlands.

PMID: 34099308
DOI: 10.1016/j.pec.2021.05.038

Abstract

Objective: To explore clinicians' and women's views and experiences with managing polycystic ovary syndrome (PCOS).

Methods: Semi-structured interviews with 36 clinicians and 26 women with PCOS. Clinicians were recruited through advertising via relevant professional organisations, snowballing and contacting clinics across Australia. Women with PCOS were recruited through social media advertising. Transcribed audio-recordings were analysed thematically using Framework analysis.

Results: Findings across women with PCOS and clinician interviews were organised into three themes. Both women and clinicians experienced 1) challenges with managing PCOS, often stemming from the disparate and wide spectrum of presentations, issues with current treatment options (including limited evidence) and the long-term nature of management. Both spoke about 2) online information about PCOS and alternative treatments, including lack of relevant information and widespread misinformation. 3) Follow-up and continuity of care, where we found notable differences between women's and clinicians' expectations.

Conclusions: This is the first study to explore both clinicians' and women's experiences with managing PCOS, illustrating several challenges in managing this heterogeneous condition.

Practice implications: Clarifying and addressing patient expectations, providing personalised counselling and information according to PCOS phenotype and a multidisciplinary approach may reduce uncertainty and improve patient-centred care.

Keywords: Communication; Complementary and alternative treatments; Patient expectations; Polycystic ovary syndrome; Treatment.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Australia
Communication
Female
Humans
Patient-Centered Care
Polycystic Ovary Syndrome* / therapy
Qualitative Research