Living With Polycystic Ovary Syndrome
Condition: Polycystic Ovary Syndrome
MeSH terms: Polycystic Ovary Syndrome; Syndrome
Study type: Interventional

Summary: 
      This project aims to develop and pilot an evidence-based structured education program that
      can be run in groups to enable women with PCOS to make lifestyle changes, which will help
      them improve their PCOS and reduce the risk of future PCOS-related complications.
    

Detailed description: 
      The first aim of this project is to develop an evidence-based structured education programme
      for women with PCOS. According to the Medical Research Council framework for complex
      interventions, robust patient-education programmes should have an evidence-based structured
      written curriculum, which is delivered by trained educators and is regularly assessed and
      audited. To meet these standards, the investigators first aim to develop a written curriculum
      for the structured education programme, written presentation material for the educational
      sessions and participants' handouts, but also material for training for the educators who
      will deliver the programme.

      The philosophy of the programme is based on patient empowerment. The structured group
      education programme will be based on psychological theories of learning including the
      Leventhal's common-sense theory, the dual-process theory, and the social learning theory.
      Similar to previous successful programmes in diabetes education and based on the experience
      gained by conducting the education programme "Living with type 2 diabetes" in our centre, the
      programme will be designed as a six-hour of education programme with a formal and informed
      curriculum. It will be offered in two three-hour sessions of teaching for 8-12 PCOS women at
      a time. Attendees will be encouraged to be accompanied by a person of their choice.

      Initial thoughts on the curriculum and the format of the written material have been already
      discussed within our clinical and research team (Dr Papageorgiou, Professor Sathyapalan, Mrs
      Baldwin consultant endocrinologists, general practitioners and dietitian
      specialists/educators delivering the "Living with Diabetes" education programme for patients
      with type 2 diabetes) based on their experience and views expressed to them by women with
      PCOS. As such, the areas that will be covered in the structured education programme include:

        -  Thoughts and feelings of the participants around PCOS

        -  Understanding PCOS pathophysiology: what happens in the body

        -  Understanding the risk factors (e.g., obesity) and health risks associated with PCOS

        -  Emotional wellbeing and PCOS

        -  Management of PCOS symptoms -how to take control:

             -  Pharmacological options (i.e., hormonal contraceptives, anti-androgens, and insulin
                sensitisers)

             -  Lifestyle changes (i.e., basics of energy balance, healthy eating based on Eat well
                Plate, mindful eating, physical activity recommendations, practical advice).

        -  Planning for the future (e.g., family planning, screening for long-term conditions).

      Importantly, the investigators are also going to conduct a patients' survey to find out what
      women with PCOS expect to gain from an educational programme addressing several aspects of
      PCOS. The investigators will use the collected data to further refine the aspects of PCOS
      that will be included in the final curriculum of the programme.
    

Intervention name(s): Survey on patient's perspectives on the development of an structured education programme for PCOS; Pre-pilot questionnaire; Piloting the structured education programme for PCOS; Post-pilot questionnaire; cognitive outcomes outcome evaluation form
Intervention type(s): Other; Other; Other; Other; Other
Intervention description(s): The outcome of this survey will help with developing curriculum for the structured education programme.; The questionnaire is aimed to capture the knowledge and expectations of the participants from taking part in the educational sessions.; Piloting the education program through 2 educational group sessions; The questionnaire aimed to capture participant's satisfactions and knowledge gained by taking part in the pilot study; This aimed to capture skills developed, knowledge gained and changes in participants behaviour and perceptions by taking part in the pilot study.
Intervention model: Single Group Assignment
Masking: None (Open Label)
Primary purpose: Other