P-738 Impact of limited reproductive health awareness on PCOS diagnosis timelines and the need for improved patient education
Authors: Ali Z , Vasavan T , Meeladah G , Eliza W , Getreu N , O’Neill H 
Published: June 2022

Study question

Does the lack of awareness of Polycystic ovary syndrome (PCOS) symptoms contribute to a delay in diagnosis?

Summary answer

Limited awareness regarding reproductive health symptoms can negatively impact help-seeking behaviour, delaying diagnostic timelines.

What is known already

PCOS is a common endocrine condition estimated to affect up to 20% of women worldwide. Frequently observed symptoms include oligomenorrhea or amenorrhea, clinical features of hyperandrogenism, metabolic dysfunction, infertility and poor mental health.

Despite its prevalence and the debilitating impact of symptoms on quality of life, it takes an average of two years and over three clinical consultations to diagnose. Delayed diagnosis may be influenced by a lack of standardised screening guidelines, poor understanding of how PCOS manifests in ethnic minorities and hesitancy from the general public to seek help for their reproductive health symptoms.

Study design, size, duration

A cross-sectional study investigating the barriers to diagnosis of PCOS.

Participants aged 18 or older with an existing or suspected diagnosis of PCOS were invited to complete an online survey across five days in January 2022.

The survey assessed general demographic information, the influence of symptoms on their daily life and their experiences with receiving a diagnosis.

Of the 200 responses, 143 responses were analysed and 99 were included in the results.

Participants/materials, setting, methods

Participants were aged between 18 - 45 and provided informed consent after reading a patient information leaflet detailing the background of the study.

75 (52.44%) participants were UK-based, while 68 (47.55%) were based abroad.

Ethical approval of all study-related documents was given by the Hertility Health Research Ethics Committee.

The online survey was presented on Typeform and disseminated via the social media platforms Instagram, Twitter and LinkedIn.

Descriptive statistics are presented.

Main results and the role of chance

Of the 143 participants, 99 (69.2%) reported a PCOS diagnosis. Anxiety (71.4%), irregular menstrual cycles (69.4%) and weight-related concerns (64.3%) were the most commonly reported symptoms.

Despite the majority reporting that their symptoms impacted daily life (80.8%), mental health (82.8%), and educational or work performance (70.7%), only 10.2% had sought medical help immediately while 75.5% waited for up to 2 years.

Not realising their symptoms required medical help (73.2%), lack of information regarding routes to care (18.3%) and stigma from family members (18.3%) were the most common reasons why medical help was not sought immediately.

Following clinical consultations, 54.7% of participants were not satisfied with the information provided to manage their diagnosis. Although mental health-related symptoms were most frequently reported (75.5%), only 4.8% reported that management strategies for mental health were referenced in their consultations.

Of the 93.2% of those looking for extra information online, only 52.3% used official websites such as the National Health Service (NHS) website. Many participants also chose to use social media sources such as Instagram and Tik Tok for information (52.3%) and support (59.3%).

Limitations, reasons for caution

Although there was a global uptake, the study needs to be carried out on a larger scale with an emphasis on minority ethnicities.

Recall bias could have also impacted findings as the participants were required to provide details on their entire diagnosis experience.

Wider implications of the findings

It is evident that limited awareness regarding reproductive health can delay the diagnosis of PCOS.

Due to unsatisfactory management by healthcare providers, patients heavily rely on unregulated channels such as social media to obtain reproductive health information, highlighting the need for better Sex and Fertility Education programs and improved accessibility.

Trial registration number

NA