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

Background: ANCA-associated vasculitis is a rare multisystem
disease. Modern therapeutic protocols have turned ANCA-associated
vasculitis from an acute frequently fatal disease into a chronic disease
requiring long-term immunosuppression. Patients must often manage
substantial burdens related to chronic illness and treatment-related
side effects. Patients often need help and support to manage their
disease. The aim of this study was to explore the experience of
patients and of informal carers of patients about the impact of
managing a rare rheumatic condition.
Methods: A qualitative approach using semi-structured interviews
was used. Interviews were conducted with a purposeful sample of 18
pairs of patients with ANCA-associated vasculitis and their informal
carers. The interviews were used to explore the participants
experience and affects of caring. The interviews were recorded and
transcribed as verbatim text and analysed using the framework
technique.
Results: 18 patients (seven female) [disease: ten granulomatosis with
polyangiitis (GPA); four microscopic polyangiitis (MPA); four eosinophilic
granulomatosis with polyangiitis (EGPA), age range 34-78,
disease duration 1- 20 years. Caregiver and patient perspectives
were shared. The emerging themes were the physical and psychological
impact of the disease, the need for constant vigilance and fear of
the future.
Conclusion: Both patients and carers faced a range of challenges in
managing a rare condition. From the seriousness of the illness, dealing
with the emotional toll and knowing what to expect. This study offers
insight into the experiences of patients and informal carers and health
care professionals should address individuals’ fears and expectations
for recovery.
Disclosures: J.M. honoraria; Abbvie, Bristol Myres Squibb. K.G. and
R.A.W. have declared no conflicts of interest.