Development and pilot of the “Living with Polycystic Ovary Syndrome (PCOS)” structured education programme

Project Description

Polycystic ovary syndrome (PCOS) is the most common endocrine condition in reproductive age group females and it is associated with various clinical features including irregular periods, male-pattern hair loss from the head and excess hair in other body parts (e.g., chin), oily skin or acne, difficulty in getting pregnant (because of irregular ovulation or failure to ovulate) and obesity. There are major gaps in the healthcare provision for this population including delayed diagnosis of the condition accompanied by inadequate provision of information about PCOS. Despite the documented benefits of weight loss on PCOS-symptoms and complications, there is only limited scope of a pragmatic approach for lifestyle management in PCOS. Structured education programmes for diabetes have been shown to significantly improve self-management and diabetes-related outcomes; however, there is only limited evidence on their use as a treatment option for women with PCOS, who are also at risk of diabetes and other metabolic complications.

Given this literature gap and the need and interest for education expressed by PCOS women attending our PCOS clinic or participating in our PCOS research (Academic Diabetes, Endocrinology and Metabolism Unit; Hull York Medical School and Hull and East Yorkshire Hospitals NHS Trust), we aim to develop and pilot an evidence-based structured education programme for women with PCOS, entitled “Living with PCOS”. More specifically, the development phase will involve the production of a written curriculum, written presentation material for the educational sessions, participants’ handouts and written material for training the educators who will deliver the programme, as well as training of the educators. The pilot phase will include the delivery of the education programme, the assessment of the process and the evaluation of cognitive outcomes (i.e., health beliefs, awareness and knowledge) related to PCOS. The findings of this work will be used to guide a NIHR funding application, which will investigate the effects of this educational model on behaviour change and PCOS-related outcomes in a randomised controlled trial.