Background: Systemic vasculitides are rare but often organ- or life-threatening diseases where delays in diagnosis and treatment may have significant impact on patients' morbidity and mortality. Contemporary data regarding patients' journey from symptom onset to living with vasculitis are limited. Objectives: We aimed to explore the experiences of patients with systemic vasculitides regarding their journey from symptom onset to diagnosis and daily living. Methods: Patients with systemic vasculitides who were seen and followed at a tertiary referral center (Clinical Immunology- Rheumatology Unit, General Hospital of Athens "Hippocration", Greece) were included in the study. All patients answered a special questionnaire, regarding their journey from their initial symptoms until their last site visit. Demographic and clinical characteristics of the patients were collected through both the medical record and questionnaires. Results: 30 patients with a median age of 57 years, 66% females with systemic vasculitides (GPA 53%, MPA 6%, ΕGPA 26%, GCA 10%, TAK 3%) were included. The mean interval from symptoms' onset to final diagnosis was 7 months. The main presenting symptoms were fatigue/weakness (56%), arthralgias (53%), cough/dyspnea (53%), fever (46%), rashes (33%), headache (20%), asthma (20%), visual disturbances (10%), rhinorrhea (10%), serositis (6%) and jaw claudication (3%). The initial patient assessment was performed mainly by an Internist or General Practitioner (36%) followed by other specialties (Pulmonary: 16%, ENT: 10%, Neurologist: 10%, Orthopedic: 6%, Gastroenterologist: 6%, Cardiologist: 6%, Endocrinologist: 3%) while only 3% were seen initially by a Rheumatologist. Immediate referral to a rheumatologist was made by the 1st evaluating physician in only 20% of cases. Ultimately, the diagnosis was made by a rheumatologist in 74% of cases. Almost half of the patients (53%, 16/30) reported that they had to stop work because of their disease (23%, 7/30 permanently) while 40% reported that their health-related expenses were quite high. Conclusion: Patients with systemic vasculitides still experience significant delays in their diagnosis mainly due to delayed referral to the specialist (rheumatologist) while the disease. impact on their daily life is significant. These preliminary data emphasize the unmet needs for earlier recognition-diagnosis and better management of systemic vasculitides. REFERENCES: NIL. Acknowledgements: Supported in part by the Special Account for Research Grants (S.A.R.G.), National and Kapodistrian University of Athens, Athens, Greece (DV #12085, 12086). Disclosure of Interests: None declared.
No takes yet. Share an insight, caveat, or question.
Mavrea et al. (2024) studied this question.
Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context: