SHADE-PsD - Sex Hormones and Disease Experience – Psoriatic Disease

Psoriasis and psoriatic arthritis are long-term inflammatory conditions that can significantly affect quality of life. Many patients report that their symptoms change at different stages of life, such as during the menstrual cycle, pregnancy, after childbirth, or around menopause. However, these experiences are not always captured in routine clinical care, and some aspects may be difficult to raise in clinic due to time constraints, stigma, or concerns about whether they are considered medically relevant.

This study aims to better understand how fluctuations in female sex hormones influence the lived experience of people with psoriasis and psoriatic arthritis by analysing large volumes of anonymised patient discussions from online forums and social platforms. These data provide insight into experiences, symptoms, and concerns that are not routinely or systematically sought in clinical settings. By combining this approach with patient partner input, the project seeks to understand the patient perspective on this issue, highlight unmet needs and priorities that matter most to patients, helping to inform future research and improve patient-centred care.

Summary

This study explores how people with psoriasis and psoriatic arthritis experience changes in their disease in relation to fluctuations in female sex hormones. Using large-scale anonymised patient discussion data and patient partner input, the project aims to capture real-world experiences that are often underrepresented in clinical datasets.

Background

Epidemiological and immunological evidence suggests that hormonal changes may influence the severity and onset of psoriasis and psoriatic arthritis. Disease improvement during pregnancy, post-partum flares, menstrual cycle variation, and possible effects of menopause have all been reported, but evidence remains inconsistent and limited. Patient priority-setting partnerships have highlighted this topic as a key unmet research need. This study addresses that gap by focusing on patient-reported experience rather than solely clinical outcomes.

Aims and objectives

Aim

To understand patient experiences of psoriasis and psoriatic arthritis in the context of changing female sex hormones.

Objectives

• To analyse large-scale anonymised patient discussions related to hormonal changes and psoriatic disease
• To identify common themes, symptom patterns, and unmet needs reported by patients
• To engage patient partners in interpreting findings to ensure relevance and acceptability

Study design

This is a qualitative analysis of anonymised patient-generated data sourced from online forums and social platforms. Data will be curated and processed using White Swan’s Million Minds platform, followed by thematic and exploratory analysis conducted at the University of Oxford. Patient partners will be involved through a round-table discussion to contextualise findings.