GPPCOS: exploring women’s experience of the management of PCOS in general practice.

Problem

Polycystic Ovarian Syndrome (PCOS) affects up to 1 in 5 women, with the diagnosis and management mostly occurring in general practice. It can affect many parts of a woman’s physical and mental health. Recent evidence shows that there is a high rate of under-diagnosis, with many women experiencing significant delays in diagnosis. The aim of the study was to research patients’ perspectives as to how PCOS is managed in General Practice, whether it is being viewed as a “multi-system” condition rather than just one of fertility, and how the long-term effects of the syndrome are being addressed.

Approach

We designed a questionnaire to investigate women’s experience of how PCOS is being diagnosed, treated and managed in General Practice, including consideration of its longer-term potential consequences. Women were signposted to the online questionnaire through websites/social media of four charities/patient support networks and BBC Radio. The questionnaire comprised binary, multiple choice answers as well as open text boxes allowing for a mixed methods analysis. In addition women were asked to contact the researcher if interested in taking part in a more thorough semi-structured telephone interview. Open questions were analysed using framework analysis and themed accordingly.

Findings

333 women completed the questionnaire. They were diverse in terms of age (range 19-56yrs, mean 35yrs) and ethnicity (white British 59%, Indian 25%; other ethnicities 16%). The recalled “lag time” between presenting to their GP with symptoms and being diagnosed varied from less than a week to over 10 years; 30% of women reported 1-6 months and 34% 6 month-3 years.Only 12% of women recalled having been told by a GP about the risk of developing diabetes and none recalled being told about endometrial hyperplasia. Although 74% felt PCOS had impacted on their mental health, only 39% had discussed this with their GP. In 115 (34%) cases, women did not recall their weight being discussed by their GP despite being overweight or obese. In addition, 11 women contacted the researcher and follow up telephone interviews took place. In free text comments embedded in the questionnaires and semi-structured interviews a number of themes emerged in relation to how PCOS affected the mental health, quality of life, and the extent to which this was being recognised and addressed by their GP.

Consequences

This study highlights the extent to which women have mixed experience of general practice care for PCOS, and for many women it was experienced as being inadequate. PCOS appears not to be viewed as a chronic metabolic condition, with women not able to recall being told of their higher risks for co-morbid conditions. Concurrent mental health problems are often not being addressed.