P303 Development of a Behçet’s disease specific patient concerns inventory

Abstract

Abstract Background/Aims Behçet’s Disease (BD) is a rare multi-system variable vessel vasculitis. It is characterised by oral ulcers, genital ulcers and ocular involvement; however, expression can vary, with patients experiencing a range of symptoms affecting several body systems. This creates the need for an individual and holistic approach to management in order to optimise patient care. A patient concerns inventory (PCI) is a validated tool used to encourage patient-led reviews by exploring areas of concern and unmet needs, and has shown to increase patient satisfaction in oncology and rheumatology consultations. The aim of this study was to develop a novel BD-specific PCI and to assess the impact of this tool in clinic following ethical approval. Methods Phase I: Literature search conducted to identify concerns and areas of unmet need in BD patients to create an initial PCI across four separate domains, including physical and functional well-being, psychological and emotional well-being, social care and social well-being, and treatment related side effects. Phase II: PCI presented to the BD multi-disciplinary team for feedback and refinement. Members were asked to rate each item based on how frequently that issue was discussed in consultations, from ‘never’, to ‘sometimes’, ‘most of the times’ or ‘every time’. Phase III: Updated version of PCI presented to patient groups in association with Behçet’s Society UK. Patients were asked to rate on an identical scale. Collective feedback allowed for a final version of the PCI to be created. Phase IV: Pilot study to test the effectiveness of the PCI in BD clinics. Pre- and post-PCI groups will be created. The mean differences in consultation time, number of concerns and patient satisfaction will be compared. Results Phase I: Following the application of an inclusion and exclusion criteria, 35 papers yielded a total of 54 items for the initial PCI. Phase II: 12 responses were received, which led to the exclusion of 9 items based on 60% of the respondents reporting this issue was ‘never’ discussed in clinic. A total of 2 items were added, which led to a 47-item PCI. Phase III: 239 responses received from BD patients. 3 items eliminated and 4 added on. Final 48-version PCI created. Phase IV: Pilot study will commence following ethical approval. Conclusion A PCI is a holistic tool used to improve communication and encourage patient-led consultations. Phases I to III have led to the creation of a 48-item BD-specific PCI which will be tested in clinic as a pilot following ethical approval. We hope to demonstrate an increase in patient satisfaction following the introduction of a PCI in BD clinics. Disclosure S. Mukhtar: None. R. Moots: None.