Vasculitic neuropathy-related disability, pain, quality of life, and autonomic symptoms: A survey of 312 patients

Michael P Collins; Robert D M Hadden; Raashid A Luqmani

doi:10.1093/rheumatology/keae038

Vasculitic neuropathy-related disability, pain, quality of life, and autonomic symptoms: A survey of 312 patients

Rheumatology (Oxford). 2024 Jan 30:keae038. doi: 10.1093/rheumatology/keae038. Online ahead of print.

Authors

Michael P Collins¹, Robert D M Hadden², Raashid A Luqmani³

Affiliations

¹ Medical College of Wisconsin, Milwaukee, WI, USA.
² Department of Neurology, King's College Hospital, London, UK.
³ Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Science, University of Oxford, Oxford, UK.

PMID: 38291915
DOI: 10.1093/rheumatology/keae038

Abstract

Objectives: To assess self-reported symptoms of neuropathy, disability, pain, health-related quality of life (HR-QOL), and autonomic dysfunction in patients with vasculitis.

Methods: Patients with vasculitis (with or without neuropathy) were invited by Vasculitis UK to complete an anonymous online survey.

Results: 312 patients (71% female) responded. Median age was 61-70 years. Median duration of vasculitis was 4 years (<2 months to > 15 years). Vasculitic types included granulomatosis with polyangiitis (34%), unspecified ANCA-associated vasculitis (13%), microscopic polyangiitis (11%), eosinophilic granulomatosis with polyangiitis (11%), giant cell arteritis (10%), non-systemic vasculitic neuropathy (2%), and other (19%). Many patients reported foot/hand symptoms suggestive of neuropathy, including numbness (64%), pain (54%), or weakness (40%). 242 patients (78%) met our definition of probable vasculitic neuropathy: diagnosis of neuropathy by vasculitis team OR numbness OR weakness in feet/hands. Only 52% had been formally diagnosed with neuropathy. Compared with 70 patients without neuropathy, neuropathy patients had greater disability measured by the inflammatory Rasch-built Overall Disability Scale (centile mean 63.1 (SD 17.3) vs 75.2 (16.7); p< 0.0001), Inflammatory Neuropathy Cause and Treatment scale (median 2 (IQR 1-4) vs 0.5 (0-2); p< 0.0001), and modified Rankin scale (median 2 (IQR 1-3) vs 2 (1-2); p= 0.0002); greater pain on an 11-point rating scale (mean 4.6 (SD 2.6) vs 3.5 (2.8); p= 0.0009); and poorer HR-QOL on the EQ5D-3L (summary index mean 0.58 (SD 0.29) vs 0.69 (0.28); p<0.0001). Two-thirds reported autonomic symptoms (not associated with neuropathy).

Conclusion: Neuropathy is common and associated with significant disability, pain, and impaired HR-QOL in patients with systemic vasculitis.

Keywords: Vasculitis; autonomic; chronic pain; disability; quality of life; vasculitic neuropathy.