SFEBES2021 Poster Presentations Reproductive Endocrinology (31 abstracts)
PCOS pearls - gathering perceptions and opinions from lived experiences of people with polycystic ovary syndrome
Gar Mun Lau 1 , Mirna Elghobashy 1 , Maureen Busby 2 , Kristine Stacke 3 , Helena Gleeson 4 , Lynne Robinson 5 , Wiebke Arlt 4,6 , Antje Lindenmeyer 7 , Caroline Gillett 6 & Punith Kempegowda 4,6
1College of Medical and Dental Sciences, University of Birmingham, Birmingham, United Kingdom; 2PCOS Vitality, Belfast, United Kingdom; 3PCOS Verity, London, United Kingdom; 4Department of Endocrinology, Queen Elizabeth Hospital, University Hospitals Birmingham NHS Foundation Trust, Birmingham, United Kingdom; 5Birmingham Women’s Hospital, Birmingham Women’s and Children’s NHS Foundation Trust, Birmingham, United Kingdom; 6Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, United Kingdom; 7Institute of Clinical Sciences, University of Birmingham, Birmingham, United Kingdom
Introduction: Existing educational resources for polycystic ovary syndrome (PCOS) have limited inclusion of patient perspectives. We invited people with PCOS to share their lived experiences to understand their perception and opinion on the current standard of care.
Methodology: Women aged 18-60 years with PCOS were invited to complete an online survey in April and May 2021. The survey had open questions focused on people’s lived experiences with PCOS. Participants had the option to share their views either as written text or as voice note audio recording(s) on WhatsApp. The data from audio were transcribed verbatim. Data were coded by thematic inductive method using NVivo 12 initially by two study members independently. These codes were then reviewed by two senior study members to identify common themes.
Results: 43 of 45 participants had a formal diagnosis of PCOS, the remaining two had suspected PCOS which was under active investigation. Four participants opted to share their views as voice note recordings; one of them could not be contacted as they had incorrectly inputted their phone number. Overall, five common themes emerged: symptoms (504 references by 42 participants), patient journey 421 references by 42 participants), knowledge (197 references by 40 participants), peer-to-peer advice (162 references by 41 participants), and impact of PCOS on social aspects of life (42 references by 19 participants). Within these themes, emotional wellbeing, attitudes towards healthcare professionals, knowledge of signs and symptoms, being involved in care, and societal expectations of women were the most discussed topics.
Conclusions: PCOS affects the everyday lives of those with the condition, with many feeling dissatisfied with the clinical support they currently receive. We propose involving people with PCOS to co-create educational resources informed by lived experiences which will help those newly diagnosed to gain a more comprehensive and true-to-life understanding of the condition.
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Endocrine Abstracts
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