Hope Programme for PCOS
Digital Hope Programme for adults with polycystic ovary syndrome (Hope PCOS): a mixed methods feasibility randomised controlled trial
This work was supported by a Child Development Fund Research Grant from the Waterloo Foundation (Ref no. 1423-5084). The project is delivered in partnership with Verity PCOS charity and H4C.
The project was a feasibility test of a randomised controlled trial of the digital self-management and mental wellbeing Hope Programme for adults with polycystic ovary syndrome (Hope PCOS).
PCOS is a common endocrine condition affecting around 1 in 10 women and adults assigned female at birth. People with PCOS can have a range of issues affecting how their bodies produce and respond to insulin and sex hormones. In the shorter term, they may experience acne, weight gain, growth of unwanted hair, hair loss from the head, problems with periods, and irregular or absent ovulation that makes it difficult to get pregnant. In the longer term, having PCOS may increase a person’s risk of problems with sleep, e.g. sleep apnoea, post-natal depression, type 2 diabetes, coronary heart disease or stroke.
PCOS has an adverse impact on mental wellbeing due to a range of factors, including:
Symptoms of PCOS and visible body changes affecting a person’s sense of self and identity.
Self-criticism and/or stigma from other people about being in a bigger body or about looking different to the norm that is expected for a person’s sex.
Difficulty getting diagnosed, getting accurate information, and struggling to get the right treatment to meet individual needs.
Worries about long term health risks.
Healthcare professionals can help manage the condition, and people with PCOS also often look after their own health and wellbeing by doing self-management.
The digital Hope PCOS Programme is a six-week online course where adults with PCOS learn with and are supported by peers with the same condition. It aims to improve mental wellbeing and support self-management.
Read how the Hope PCOS Programme was co-created in this peer reviewed paper:
Digital Hope Programme for adults with polycystic ovary syndrome (Hope PCOS): a mixed methods feasibility randomised controlled trial
We ran a feasibility randomised control trial with 131 people. Participants had a 50/50 chance of being in either i) the digital Hope PCOS programme or ii) a waiting list control group, who accessed the digital Hope PCOS programme after a wait of three months.
Some of the questions we wanted to answer included:
Would adults with PCOS want to take part in our intervention?
Would they be happy to be randomised to the digital Hope PCOS programme vs. the waiting list control group?
How much of the programme would they use?
What would they like or dislike about it?
Would they complete our study questionnaires and take part in interviews after the intervention period, to feed back on their experiences?
We asked participants to complete questionnaires and interviews to help us understand what worked, and what did not. We can now make adjustments to future research designs and improvements to the intervention programme. The next step may be to run a fully powered randomised controlled trial, to test definitively whether the intervention has any measurable effects on self-management and mental wellbeing for adults with PCOS in the short, medium and longer term.
We are achieving impact from this project through:
Creation of a multidisciplinary team of experts (by profession and lived experience), to expand research and provide solutions in this underserved area.
The refinement of a usable, evidence-based, co-created, digital intervention ready to test in a definitive trial.
Dissemination activities to raise awareness about the psychosocial impact and self-management support needs of those with PCOS.
Preliminary results of this trial will be presented as a poster at ENDO 2024 June 1st 2024, in Boston:
hope PCOS Participants’ stories
Stories of Helen, Fran and Sarah who completed the Hope for PCOS programme.
The trial is registered with International Standard Randomised Controlled Trial Number (ISRCTN) at https://doi.org/10.1186/ISRCTN17639209.
The Principal Investigator is Dr Carol Percy, Assistant Professor in Psychology, Centre for Intelligent Healthcare at Coventry University.
Email: c.percy@coventry.ac.uk Profile: https://pureportal.coventry.ac.uk/en/persons/carol-percy
