FUNCTIONAL, DISABILITY-RELATED AND CAREGIVER PRODUCTIVITY BURDEN IN PULMONARY FIBROSIS IN GREECE
Author(s)
Garyfallia Stefanou, MSc1, Stylianos Ravanidis, PhD1, Maria Thanou, Patient Representative2, Fragkiskos Diamantis, Patient Representative2, Elena Magafa, Patient Representative2, Georgia Kourlaba, PhD3.
1ECONCARE LP, Athens, Greece, 2Hellenic Pulmonary Fibrosis Association “Lungs of Life”, Athens, Greece, 3Department of Nursing, National and Kapodistrian University of Athens, Athens, Greece.
1ECONCARE LP, Athens, Greece, 2Hellenic Pulmonary Fibrosis Association “Lungs of Life”, Athens, Greece, 3Department of Nursing, National and Kapodistrian University of Athens, Athens, Greece.
OBJECTIVES: To describe functional, disability-related and caregiver productivity burden among people with pulmonary fibrosis (PF) in Greece.
METHODS: An online cross-sectional online survey was conducted by the Hellenic Pulmonary Fibrosis Association “Lungs of Life” among adults with PF between May and June 2026. The questionnaire could be completed by patients and their caregivers. Patient-level data included employment, activity impairment, work role changes, early retirement, disability committee evaluation and perceived difficulty accessing disability benefits (0=very easy; 10=very difficult). Caregiver data included employment, caregiving responsibilities, work impact and work productivity and activity impairment (WPAI).
RESULTS: Among 163 participants, 65.0% reported idiopathic PF and 35.0% other PF. Only 8.1% were currently employed. Median patient activity impairment was 70% (40-90), higher among patients using any oxygen device than non-users [90% (70-100) vs 30% (10-50); p<0.001]. Work-related consequences included changes in job role or work environment (20.1%) and requests for early retirement (12.3%). A total of 79/159 patients (49.7%) had applied for disability assessment through the relevant committee; among applicants, disability status had been approved in 75.9%, rejected in 3.8% and pending in 20.3%. Median perceived difficulty in accessing disability benefits was 7/10. Caregiver burden was also evident: among 79 caregivers who participated, 29/78 (37.2%) were in paid employment, and 42.5% reported work impact from caregiving, including lost hours (20.5%), job change (1.4%) or stopping work (20.5%). Median caregiver presenteeism was 45% (30-75), overall work impairment 56.9% (40-77.5), and activity impairment 60% (30-90). Caregiver activity impairment increased with caregiving hours (rho=0.49; p<0.001) and was higher among caregivers of oxygen-device users than of non-users [70% (40-90) vs 30% (20-40); p<0.001].
CONCLUSIONS: PF in Greece imposes substantial burden beyond clinical management, including functional limitations, disability-system involvement and caregiver productivity losses, with implications for disease burden and health policy assessments.
METHODS: An online cross-sectional online survey was conducted by the Hellenic Pulmonary Fibrosis Association “Lungs of Life” among adults with PF between May and June 2026. The questionnaire could be completed by patients and their caregivers. Patient-level data included employment, activity impairment, work role changes, early retirement, disability committee evaluation and perceived difficulty accessing disability benefits (0=very easy; 10=very difficult). Caregiver data included employment, caregiving responsibilities, work impact and work productivity and activity impairment (WPAI).
RESULTS: Among 163 participants, 65.0% reported idiopathic PF and 35.0% other PF. Only 8.1% were currently employed. Median patient activity impairment was 70% (40-90), higher among patients using any oxygen device than non-users [90% (70-100) vs 30% (10-50); p<0.001]. Work-related consequences included changes in job role or work environment (20.1%) and requests for early retirement (12.3%). A total of 79/159 patients (49.7%) had applied for disability assessment through the relevant committee; among applicants, disability status had been approved in 75.9%, rejected in 3.8% and pending in 20.3%. Median perceived difficulty in accessing disability benefits was 7/10. Caregiver burden was also evident: among 79 caregivers who participated, 29/78 (37.2%) were in paid employment, and 42.5% reported work impact from caregiving, including lost hours (20.5%), job change (1.4%) or stopping work (20.5%). Median caregiver presenteeism was 45% (30-75), overall work impairment 56.9% (40-77.5), and activity impairment 60% (30-90). Caregiver activity impairment increased with caregiving hours (rho=0.49; p<0.001) and was higher among caregivers of oxygen-device users than of non-users [70% (40-90) vs 30% (20-40); p<0.001].
CONCLUSIONS: PF in Greece imposes substantial burden beyond clinical management, including functional limitations, disability-system involvement and caregiver productivity losses, with implications for disease burden and health policy assessments.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PT16
Topic
Health Service Delivery & Process of Care, Patient-Centered Research, Study Approaches
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Rare & Orphan Diseases, Respiratory-Related Disorders (Allergy, Asthma, Smoking, Other Respiratory)