Research

Lead: Dr Laura Coates, University of Oxford

Background: Traditionally, follow-up appointments were scheduled at fixed intervals, regardless of patient need. PIFU shifts this model by giving patients control to request appointments when they most need them, reducing unnecessary visits while ensuring timely, personalised care.

Project: Dr Laura Coates identified that there was a need for resources to support clinicians and patients with the roll out of PIFU, and thus the Patient-Initiated Follow-Up (PIFU) Toolkit, was developed. It was co-designed with patients, clinicians, and experts, and is helping to reshape how outpatient care is delivered.

Outputs: The following valuable resources are now available to enable the successful implementation of PIFU:

• Clinician handbook: step-by-step guidance for embedding PIFU

• Infographics : clear, visual explanations on PIFU, including example timelines

• Videos with subtitles: clear, detailed explanations on PIFU

• Rheumatology Paper: “how can rheumatology departments start to reap the benefits? A consensus document” .

• Podcast: Exploring the patient and clinician perspective

• Patient-friendly FAQs: in accessible language

• Presentation at BSR AC 2025: Advanced Research Funding projects

• Prevention at BSR AC 2025: How can we make Rheumatology more sustainable?

• Guidance documentation: Writing outpatient clinic letters to patients guidance

The TaILOR study is a follow-on study which aims to study the clinical and cost-effectiveness of a patient-initiated follow-up (PIFU) strategy compared to traditional care pathways in people with inflammatory arthritis treated with long-term immune-suppressing therapies. The trial is using the PIFU materials developed in the project. Currently over half of the patients have already been recruited across over 30 sites in the UK.

Already in use across multiple sites, the toolkit is proving to be a valuable resource for both patients and clinicians, strengthening trust, autonomy, and shared decision-making.

Lead: Dr Charlotte Sharp, Manchester University NHS Foundation Trust

Background: Historically, healthcare professionals (HCPs) have written to each other about the people for whom they care in the third person. In 2018, the Academy of Medical Royal Colleges issued guidance advising HCPs to write clinic letters directly to patients, copied to primary care1. Despite this guidance, there is low and variable uptake in the rheumatology community across the UK nations, with scant evidence regarding rates and factors that affect uptake.

Project: Dr Charlotte Sharp set up this project to explore how rheumatology teams communicate directly with patients through letters and written updates, aiming to improve patient understanding, reduce anxiety, and support self-management. This was done in three phases:

Scoping: surveys with patients and healthcare professionals to understand current practice and language.

Exploring: interviews and focus groups to learn more about views and experiences.

Co-producing: workshops with patients and professionals to create practical resources like example letters and training tools.

Outputs: The following valuable resources are now available for further information:

• Detailed project overview: Study details and information on how to get involved

• Project Presentation: Writing to patients: Design of a study to support rheumatology multidisciplinary team to write directly to patients

• Project Poster: Supporting the rheumatology multidisciplinary team to write directly to patients

• Rheumatology Paper: Writing directly to patients, the time is now - but how?

• Presentation at BSR AC 2025: Advanced Research Funding projects

• eLearning Course: How to write a clinic letter

• Webinar: Mastering written communication with patients

The success of the study has already sparked new collaborations, with renal colleagues in Birmingham preparing to replicate the study.

Lead: Dr James Prior, Keele University

Background: People with Axial Spondyloarthritis (axSpA) frequently experience increases in symptoms (flares) related to pain, stiffness, and fatigue. These flares can be caused by different factors and therefore treatment might require different approaches. However, as Rheumatology departments are now requesting that patients arrange appointments when they feel they need one, rather than coming in for regular check-ups, we need to ensure we maintain safe, high-quality services which patients feel empowered to access. This can be difficult to achieve, as some people are not always sure when their symptoms require a Rheumatology visit.

Project: This project explores whether regular online questionnaires can help identify when someone with axial spondyloarthritis (axSpA) is experiencing a flare, and which aspects of their health are most affected. People recruited through rheumatology departments, or the National Axial Spondyloarthritis Society (NASS) will complete monthly questionnaires over a year, with the option to add responses during flares.

The study is using an electronic version of the EASi-QoL to identify flares.

Stage 1: Online longitudinal cohort – assessing whether changes in EASi-QoL scores reflect self-reported flare status.

Stage 2: Semi-structured interviews – exploring whether these score changes align with patient experience.

Update: The study successfully launched in February of this year and, with support from our Patient and Public Involvement (PPI) group, has already had success with strong engagement from patients across 16 NHS sites in England and Wales and with members of the National Axial Spondyloarthritis Society.

Stage 1 recruitment ended in July, with a total of 728 people completing the baseline survey through our online portal. These participants will continue to complete monthly questionnaire into 2026 so we can better understand how flares change over time. In the meantime, we have published our study protocol in BSR’s Rheumatology Advances in Practice journal and our baseline findings are being analysed and will be submitted for the 2026 BSR annual meeting.

We have also completed our recruitment of stage 2, with 19 people with axSpA being interviewed as part of this work. This data is also currently being analysed. The study is progressing well and remains firmly on track to achieve its objectives.