JMIR Publications

ABSTRACT

Background:

Polycystic ovary syndrome (PCOS) represents a significant global health burden requiring urgent attention. This common chronic endocrine and cardiometabolic condition affects around one in ten women and individuals assigned female at birth, with significant adverse effects on wellbeing, quality of life and mental health, and serious and complex long term health consequences. International guidelines for best healthcare practice recommend the provision of comprehensive cognitive behavioural interventions to support self-management and improve health outcomes for those living with PCOS. Web based health interventions have potential to meet this need in an accessible and scalable way.

Objective:

To identify barriers to self-management and psychological wellbeing in women with PCOS. To adapt an online self-management programme to provide a prototype digital support intervention for this population.

Methods:

An existing support programme (HOPE) was adapted for PCOS using the antecedent target measure approach. Qualitative interviews were conducted with 13 adult women living with PCOS, 3 trustees of a PCOS patient advocacy charity and 4 endocrinologists, to identify ‘antecedents’ (barriers) to self-management and psychological wellbeing. Framework analysis was used to identify potentially modifiable antecedents to be targeted by the novel intervention. At a national conference, 58 key stakeholders (patients, health professionals) voted for the antecedents they felt were most important to address. Research evidence and relevant theory were used to design a prototype for the PCOS intervention.

Results:

Voting identified 32 potentially modifiable antecedents, relating to knowledge, understanding, emotions, motivation and behaviours, as priorities to be targeted in the new intervention. A modular, online prototype Hope PCOS intervention was developed to address these, covering six broad topic areas: ‘Instilling HOPE for PCOS’, ‘Managing the stress of PCOS’, ‘Feeding your mind & body well’, ‘Body image, intimacy & close relationships’, ‘Staying healthy with PCOS’ and ‘Keeping PCOS in its place’.

Conclusions:

We identified barriers to self-management and psychological wellbeing in women with PCOS and used these to adapt an online self-management programme, tailoring it for PCOS. The new programme is a comprehensive group intervention combining education, empowerment, lifestyle management, peer support with cognitive behavioural tools and goal-setting, to be delivered by peers or co-delivered with healthcare professionals. The modular structure offers flexibility to adapt the programme further as new clinical recommendations emerge. The intervention has potential to be delivered, evaluated for feasibility and, if effective, integrated into healthcare services. Self-management interventions are not designed to replace clinical care, rather they serve as an additional source of support. The Hope PCOS programme conveys this message in its content and activities. Future research should evaluate the prototype intervention using primary outcomes such as measures of psychological wellbeing, self-management self-efficacy, depression, anxiety and PCOS-related quality of life. Future work should also assess the intervention’s acceptability, scalability, and cost-effectiveness.