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

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.
Original languageEnglish
JournalPatient Education and Counseling
DOIs
Publication statusAccepted/In press - 28 May 2021

Keywords

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

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