Total Burden of Long Term Psoriasis - TULiPS

In the NIHR funded PROMPT programme (early detection to imPRove OutcoMe in people with undiagnosed Psoriatic arthritis) we recruited 2225 participants from primary care with psoriasis to a randomised controlled trial called TUDOR (Total bUrDen Of psoRiasis) of whom 86% consented to be approached for future studies. The TUDOR cohort is a comprehensive data-rich repository including multiple in-person clinical assessments and patient reported outcomes that can address important research questions related to risk factors for the development of psoriatic arthritis, targeted screening, disease impact, treatment patterns and long-term outcomes. We can use the TUDOR cohort in parallel with our own studies using the UK Clinical Practice Research Datalink (CPRD) to provide external validation of published prediction tools for psoriatic arthritis, and to further refine such models for use in clinical practice. We will also collaborate with a large European consortium (HIPPOCRATES) undertaking similar work, albeit completely online, and which will benefit from our more granular TUDOR data. PROMPT also sought views from patients on the impact of receiving a diagnosis of psoriatic arthritis. Participants identified self-management support needs, including help with treatment decisions, lifestyle changes and strategies to cope with the emotional impact of psoriatic arthritis around the time of diagnosis. To improve care early in the patient pathway, we will conduct a realist review of resources to support self-management and hold Patient and Public Involvement and Engagement (PPIE) workshops to develop a programme theory of what works, for whom and why and identify a research agenda to address gaps that emerge from the review, including patient groups with unmet needs. Aims Understand the long-term outcome of psoriatic arthritis related to timing of diagnosis in primary care. Provide a strategy for screening of psoriatic arthritis in psoriasis populations. Address the self-management needs of groups of patients newly diagnosed with psoriatic arthritis. Objectives Establish a longitudinal cohort of psoriasis patients undiagnosed for psoriatic arthritis at baseline and consented from the TUDOR randomised control trial. Externally validate current risk factor algorithms for predicting the development of psoriatic arthritis. Identify patient groups whose self-management support needs are not met. Work Plan Re-consent TUDOR participants for long-term follow-up studies, integrate existing data into a secure SQL database hosted by the Royal United Hospital, Bath, and develop arrangements and platforms for sharing anonymised data for future collaborative research. Apply existing risk algorithms for psoriatic arthritis to TUDOR and CPRD cohorts and refine the models to include other potential components. Conduct a realist review of existing self-management resources plus stakeholder workshops to understand what works, for whom and why and to identify gaps in self-management resources. Timelines The work will be completed within 15 months. Anticipated Impact and Dissemination TUDOR data will be secured for future studies and ultimately help provide the evidence base for psoriasis and psoriatic arthritis management guidelines. Gaps in current self-management resources will be identified that can be addressed in future work. Implications for practice and opportunities for collaborative research will be disseminated via the team s patient, clinical and academic networks.