Background Primary Systemic Vasculitis (PSV) is a group of life-threatening auto-immune multi-system disorders. The British Society for Rheumatology recommends that these patients are referred to a consultant with a special interest with vasculitis as they require rapid diagnosis and initiation of therapy, alongside careful, comprehensive surveillance. One of the major challenges for planning vasculitis services is that due to the multi- system nature of these disorders, these patients utilise a wide range of health care services.
Objectives With pressure on the National Health Service to reform patient care in a cost effective way, we set out to evaluate, on a national level how care is currently being provided for patients with Vasculitis. We wished to ascertain which disciplines patients presented to, and following diagnosis, are managed by. We aimed to evaluate for differences in care across the various specialties by means of reviewing disease monitoring and the prescription of prophylactic medication. Finally we investigated the patient’s perception and utilisation of primary care.
Methods With the assistance of the patient support group, Vasculitis UK, we designed and distributed a comprehensive questionnaire to all 700 UK members. This questionnaire covered aspects of care from the onset of symptoms to their current treatment and monitoring.
Results Response rate was 347 (49.6%). Of these 306 responses were analysed from patients with Primary Systemic Vasculitis. 241 (79%) had Granulomatosis with Polyangiitis, 41 (13%) Churg Strauss Syndrome, 15 (5%) Microscopic Polyangiitis and 9 (3%) other “Systemic vasculitis/ANCA Associated Vasculitis”. Patients were seen most commonly in ENT (42%) and rheumatology (25%) clinics prior to diagnosis. Post- diagnosis the majority of patients (76%) were under the care of rheumatology and/or nephrology. Of the 294 (96%) patients who received steroids, only 52% and 60% reported co- prescription of calcium and Vitamin D respectively. 229 patients (75%) received cyclophosphamide, with only 60 (25%) reporting co-trimoxazole prescription. There was no significant difference in these practices observed between nephrology and rheumatology.
However, patients were significantly more likely to have blood pressure and urinalysis monitored regularly if under nephrology (p=0.01). Despite the majority of patients feeling that their GP had a significant role in managing their health (64%), only 44% and 38% had blood test and blood pressure monitoring respectively in primary care.
Conclusions Vasculitis services in the UK are likely to remain in secondary care due to the complex nature of these diseases. However there is room for improvement in the monitoring and surveillance of this patient group. Despite patient confidence in their GP, primary care appears to be a resource currently underutilised by this group. Future service planning should include better collaboration to harness primary care skills in patient monitoring and primary prevention of disease and treatment related morbidity. This should translate to an improved “package of care” being provided for this complex population.
Disclosure of Interest H. Arya: None Declared, N. Brown Grant/Research support from: Roche, M. Venning Grant/Research support from: Roche, I. Bruce Consultant for: Roche, GlaxoSmithKline, Human Genome Sciences, Astra Zeneca and UCB Pharma, Speakers Bureau: Roche, GlaxoSmithKline, Human Genome Sciences, Astra Zeneca and UCB Pharma