# Patients’ Journey and Burden of Disease Among Patients with Axial Spondyloarthritis in Greece: A Cross-Sectional Online Survey

## TL;DR

This study explores the challenges faced by Greek patients with axial spondyloarthritis, including delays in diagnosis and significant economic and quality-of-life impacts.

## Contribution

The study provides real-world data on patient experiences with axial spondyloarthritis in Greece, highlighting diagnostic delays and burdens.

## Key findings

- Median time from symptom onset to diagnosis was 14.8 months, and to treatment initiation was 19 months.
- Patients reported significant work and activity impairment, with median impairments of 30% and 40%, respectively.
- Annual out-of-pocket expenses averaged €400, and indirect costs reached €3,321, largely due to presenteeism.

## Abstract

This study investigates the patient journey and humanistic and economic burden of axial spondyloarthritis (axSpA) in Greece, addressing a gap in real-world data on patient experiences.

A cross-sectional online survey was conducted between September 2023 – February 2024, among axSpA patients 18 years old and above, members of the Greek patients’ association “Reumazin”. Data collection included socio-demographic characteristics, medical history, quality of life via Ankylosing Spondylitis Quality of Life (ASQoL) questionnaire, work productivity impairment, treatments and resource use, and patients’ expenditures over the past 12 months. Economic burden was assessed as out-of-pocket expenses and indirect cost.

150 patients participated (47% female; median age 57 years). The median time from symptom onset to diagnosis and to treatment initiation was 14.8 and 19 months, respectively. The most common initial symptoms were back pain (77%) and stiffness (51%). Initial specialists visited included orthopedics (53%) and pathologists/general practitioners (30%), with 63% initially misdiagnosed. The median ASQoL score was 8 (Q1: 5, Q3: 12). Among employed participants (40%), median work time impaired was 30% and activity time impaired was 40%. Mean annual out-of-pocket expenses were €400 (95% CI: €354 – €453), primarily driven by treatment costs (69%). Indirect costs were €3,321 (95% CI: €2,552 – 4,447) with presenteeism cost accounting for 84%.

This study highlights diagnostic delays and the humanistic and economic burdens of patients living with axSpA in Greece, filling a critical gap in the literature and supporting healthcare providers and policymakers in improving patient care and optimising resource allocation.