Exploring the diagnosis experiences and support needs of individuals living with Polycystic Ovary Syndrome (PCOS)

Research Aim: To explore the diagnosis experiences and support needs of individuals living with Polycystic Ovary Syndrome (PCOS)

Objective: To understand the lived experiences of individuals living with PCOS in Kent, Surrey and Sussex and to co-develop with those living with the condition a set of recommendations to address issues around diagnosis and improve ongoing support

Methods: An evidence synthesis of the existing literature was conducted via a systemised scoping review. Additionally, semi-structured one-to-one interviews with a sample of 12 participants living with PCOS were undertake to further explore individual experiences

Results: The scoping review search strategy produced 1786 results and 213 potentially relevant papers, which were screened and resulted in the final papers selected for inclusion (n=16). The review of the literature uncovered a number of challenges and negative experiences of diagnosis PCOS, including time delays, lack of knowledge of healthcare professionals (HCPs), gatekeeping of referrals, feeling stigma and shame and limited provision for mental health support. The interviews uncovered that despite experiences being nuanced, they were broadly similar to the literature, and these and additional issues were experienced both pre and post-diagnosis. Challenges included a lack of knowledge of HCPs and patients, lack of support systems, unclear care pathways and wide misinformation about the condition, which impacted on the quality of life and wellbeing of individuals. The needs of those living with PCOS included better support from HCPs, more training and education, better recognition of all aspects of the syndrome, a person-centred and empathetic approach, more focus on the mental health aspects of the condition, accessible and evidence-based information and peer support.

Conclusion: The illness burden of those living PCOS is experienced variety of ways, including biophysically, psychologically and socially. Diagnostic experiences and support needs are varied and nuanced, and should therefore be addressed using a person-centred, empathetic and holistic approach, which treats the whole person instead of targeting individual symptoms. The findings indicate the need for a improved health literacy for both professionals and patients and multidisciplinary care which goes beyond the clinical approach, as well as wider societal support