275 Impact of caring for someone with a rare rheumatic condition: views from patients and informal carers

Background: ANCA-associated vasculitis is a rare multisystemdisease. Modern therapeutic protocols have turned ANCA-associatedvasculitis from an acute frequently fatal disease into a chronic diseaserequiring long-term immunosuppression. Patients must often managesubstantial burdens related to chronic illness and treatment-relatedside effects. Patients often need help and support to manage theirdisease. The aim of this study was to explore the experience ofpatients and of informal carers of patients about the impact ofmanaging a rare rheumatic condition.Methods: A qualitative approach using semi-structured interviewswas used. Interviews were conducted with a purposeful sample of 18pairs of patients with ANCA-associated vasculitis and their informalcarers. The interviews were used to explore the participantsexperience and affects of caring. The interviews were recorded andtranscribed as verbatim text and analysed using the frameworktechnique.Results: 18 patients (seven female) [disease: ten granulomatosis withpolyangiitis (GPA); four microscopic polyangiitis (MPA); four eosinophilicgranulomatosis with polyangiitis (EGPA), age range 34-78,disease duration 1- 20 years. Caregiver and patient perspectiveswere shared. The emerging themes were the physical and psychologicalimpact of the disease, the need for constant vigilance and fear ofthe future.Conclusion: Both patients and carers faced a range of challenges inmanaging a rare condition. From the seriousness of the illness, dealingwith the emotional toll and knowing what to expect. This study offersinsight into the experiences of patients and informal carers and healthcare professionals should address individuals’ fears and expectationsfor recovery.Disclosures: J.M. honoraria; Abbvie, Bristol Myres Squibb. K.G. andR.A.W. have declared no conflicts of interest.