Every year, 1.3 million routine follow-up appointments clog NHS rheumatology clinics for people with lifelong inflammatory arthritis. This trial tests whether letting patients request appointments only when needed—rather than booking them every 6 to 12 months—works as well or better than standard care. The problem is that routine appointments consume enormous resources, yet many patients may not need them. Small studies in rheumatoid arthritis suggest patient-initiated follow-up (PIFU) is safe, but no trials have tested it in other forms of inflammatory arthritis, such as axial spondyloarthritis or psoriatic arthritis. Without robust evidence, the NHS cannot confidently roll out PIFU at scale. The trial will randomise 438 patients to either PIFU or standard care and measure musculoskeletal health-related quality of life over 24 months. A parallel analysis of NHS routine data will track resource use as patients switch pathways. If PIFU proves superior or equivalent, it could free up millions of clinic appointments annually, reduce unnecessary hospital visits for patients, and help the NHS redesign outpatient services as outlined in its Long Term Plan. The study also identifies which patients benefit most, enabling targeted implementation rather than a blanket approach.
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Research Question: What is the clinical and cost-effectiveness of patient-initiated follow-up (PIFU) compared with standard booked appointments for people with inflammatory arthritis? Background: Inflammatory arthritis comprises lifelong conditions, such as rheumatoid arthritis (RA), axial spondyloarthritis and psoriatic arthritis that require long-term treatment and regular monitoring of disease and treatment. NHS rheumatology services are dominated by routine follow-up hospital appointments every 6-12 months accounting for 1.3 million appointments/year. The NHS Long term plan aims to redesign outpatient services including implementation of patient-initiated follow-up (PIFU) where patients request appointments as required. To date, there are small studies of PIFU in RA and none in other arthritis. Research is required to configure services to optimise outcomes, reassure patients and clinicians of its safety and ensure that suitable patients are selected for this pathway. Aims and objectives: Our primary objective is to establish whether PIFU is superior to standard care for people with inflammatory arthritis. We will assess effects on musculoskeletal health-related quality of life, disease activity, patient acceptability, satisfaction, experience and overall cost-effectiveness. We will investigate for factors associated with better PIFU outcomes to guide patient selection. Methods: Working with UK rheumatology departments, NHS England and the British Society for Rheumatology, we will monitor patients with inflammatory arthritis within the NHS rollout using routine data to identify NHS resource use as patients switch from standard follow up to PIFU. In parallel, we will recruit 438 patients with inflammatory arthritis who will be randomised 1:1 to PIFU or standard care. Standard care will consist of 6-12 monthly booked appointments depending on local preference. PIFU will consist of PIFU appointments as required and a 24-month safety-net appointment. The primary outcome will be musculoskeletal health-related quality of life measured by the MSK-HQ over 24 months in each group. A nested qualitative work stream will ensure that the views and experiences of patients, clinicians and service providers inform our understanding of PIFU in clinical practice. Timelines for delivery: The grant starts in Jan 2024. Confidential advisory group approval will be obtained by June allowing work on OpenSAFELY to begin with the first analysis output expected in August 2025 and later analysis in August 2027. Recruitment to the RCT will start by October 2024 with patient recruitment over 9 months and 24 months follow up. This allows 5 months for analysis from August 2027, including statistical modelling and a final 2 months for publication and dissemination. Anticipated impact and dissemination: As a national multi-centre study, this will provide the definitive study of PIFU in inflammatory arthritis to impact on practice globally. Analysis will investigate factors associated with positive outcomes allowing optimal selection of patients in future practice. Qualitative analysis will generate insights into individual and contextual factors affecting the acceptability of PIFU, identify variation across sites or between patients and provide information on how this can be addressed. Collaborations with NHS England, NHS Improvement and the British Society for Rheumatology will ensure rapid dissemination and implementation in practice.
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