Severe Period Pain Is Not Normal: A Realist Evaluation of Severe Period Pain Management in Primary Care Across the Reproductive Life Course in Wales

Background

Up to 29% of girls, women, and people assigned female at birth (AFAB) in Wales experience severe period pain (SPP)—defined by the NHS as period pain that makes it difficult to focus, move, and sleep. SPP starts around puberty and for many it does not get better with age, meaning pain is suffered for 35+ years. Individuals with SPP report missing 1 to 2 days of school/work each month, which leads to academic, economic, social, and emotional disadvantages. SPP is also very costly to the healthcare system due to frequent use.

Primary care for SPP in Wales is based on a clinical knowledge summary produced by health professionals. However, in line with research done elsewhere, we hear from stakeholders in Wales that many people do not access or benefit from the management approaches outlined in the summary. Individuals with other medical conditions and groups of people we have listened to (i.e. travelling, Muslim, neurodiverse communities) face additional and unique barriers to receiving SPP care, putting them at further disadvantage.

Aims and objectives

We will explore SPP management (pathways, resources, treatments) in primary care in Wales to better understand how access to and progression through SPP primary care is supposed to work. We will consider different settings: primary care (where diagnosis and treatments are supposed to occur), secondary care (where referred to if SPP is not successfully managed or GP believes a condition is causing SPP) and in the community (where individuals learn about SPP and how to access care from teachers, school nurses, family etc.). We will analyse routinely collected clinical practice data and interview stakeholders to see how policy goals and SPP management translate into practice, in the real world.

What we hope to discover

-Who experiences SPP, how they learn about SPP, and how they access care and support
-How SPP affects the health and wellbeing of girls, women, and people AFAB, and what their health goals are
-A better understanding of the perspectives and needs of people from Black, Asian, and minoritised ethnic backgrounds, the LGBTQ+ communities, people with physical and learning disabilities, neurodiverse people, care-experienced people, and asylum seekers to ensure SPP healthcare is equal and effective for all
-The ways that SPP management in Wales is working, who this works for and why
-How people with SPP and their healthcare providers make decisions about treatments and healthcare, to improve outcomes
-Potential changes in and between healthcare services to improve care for SPP

Public involvement and engagement

This research is co-produced with those affected by SPP and their advocates from inception to impact.

Dissemination

We will present the findings at conferences and publish in free journals to reach clinicians in Wales and internationally. We will co-produce and co-present, with bespoke PPI involvement, a summary of the findings and recommendations to optimise SPP care at community engagement events. We will create recommendations for current Welsh Government initiatives and NHS plans that aim to address and prevent inequalities in women and girl’s health. Finally, we will create a plan of next steps to address problems identified, for example, patient empowerment interventions and training for healthcare providers. This project is part of a larger program of work, which aims to improve national guidelines for SPP and related conditions.