Development of patient-initiated follow-up resources for UK rheumatology departments: a co-design study with patient and clinician collaboration

SummaryBackground Patient-initiated follow-up (PIFU) is designed to give patients more control over their follow-up care in rheumatology and relies on patients coming forward to schedule appointments and understand how and when to contact their rheumatology team. Additionally, rheumatology teams need to establish suitable criteria and have systems in place to support PIFU. Resources to inform patients with rheumatic disease about PIFU or to support its implementation in rheumatology clinics is scarce. The aim of this study was to co-design resources with patients and clinicians to support the implementation of PIFU across the UK. Methods This co-design study was done across four research centres in the UK: University of Oxford, University of Plymouth, King's College London, and the University of the West of England. The study was overseen by a steering group, who met on a monthly basis. Patients were invited through online advertisements disseminated via patient charities and clinicians were invited via email. Patients aged 18 years or older with a self-reported inflammatory arthritis and clinicians with and without experience in PIFU were included. Online patient-led and clinician-led workshops were conducted to discuss their views and experiences of PIFU, to identify the needs of both groups, and to develop PIFU resources to support its implementation. Findings Between Oct 3, 2023, and April 30, 2024, ten online workshops were conducted (including seven patient-led 61 patients and three clinician-led workshops nine clinicians). Based on discussions from these workshops several patient and clinician PIFU resources were designed. For patients, this included a PIFU video in English (with subtitles available in Welsh, Polish, Urdu, Punjabi, Romanian, and Cantonese), a frequently asked questions document, and an infographic with links to patient organisations. For clinicians, this included a handbook with case studies and a review letter template. Resources were made available on the British Society of Rheumatology and national patient organisations websites. Interpretation Patients and clinicians were supportive of PIFU and willing to contribute to the co-design of resources. They focused on information to help patients access care in a timely way and suggestions for rheumatology teams in relation to organisation and planning, patient identification, and education. This study highlights the complexity of PIFU in practice, including the need to create resources that can be modified to meet the needs of diverse patients and rheumatology teams. Funding British Society of Rheumatology.