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

Tessa Copp* (Corresponding Author), Danielle M. Muscat, Jolyn Hersch, Kirsten J. McCaffery, Jenny Doust, Anuja Dokras, Ben Willem J. Mol, Jesse Jansen

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

14 Citations (Scopus)
4 Downloads (Pure)


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

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.

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.

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.
Original languageEnglish
Pages (from-to)719-725
Number of pages7
JournalPatient Education and Counseling
Issue number3
Early online date17 Mar 2022
Publication statusPublished - Mar 2022

Bibliographical note

The study was funded by the University of Sydney Lifespan Research Network and the National Health and Medical Research Council (NHMRC) Program Grant (APP1113532), Australia.

We gratefully acknowledge the women and clinicians who participated in the study, and the project’s PCOS consumers: Nicola Smith, Wendy Liang and Belinda Snape.

We recognise that non-binary people and people of various gender identities can be affected by PCOS. All participants with PCOS identified as women in the current study, so for the purposes of this paper, the term ‘women’ will be used throughout.

Data Availability Statement

Data statement
The de-identified datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Supplementary Information
Supplementary data associated with this article can be found in
the online version at doi:10.1016/j.pec.2021.05.038.


  • polycystic ovary syndrome
  • treatment
  • communication
  • patient expectations
  • complementary and alternative treatments


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