THE PATIENT JOURNEY IN PULMONARY FIBROSIS IN GREECE: DIAGNOSTIC PATHWAYS, DELAYS, AND EARLY MANAGEMENT
Author(s)
Stylianos Ravanidis, PhD1, Garyfallia Stefanou, MSc1, 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 the diagnostic and early management journey of patients with pulmonary fibrosis (PF) in Greece and explore factors associated with diagnostic delays.
METHODS: A cross-sectional, self-reported 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 or caregivers on behalf of patients. Data was collected using a structured online questionnaire aimed to capture the patient-reported diagnostic and early management pathway. The questionnaire covered type of diagnosis, time of symptom onset, care-seeking route, specialty of physicians consulted, misdiagnosis, referral barriers, time-to-diagnosis, and treatment initiation. Symptom onset-to-diagnosis time was examined in symptomatic respondents without incidental detection.
RESULTS: Among 163 participants, 65.0% reported idiopathic PF and 35.0% other PF diagnoses. Median age was 74 years (Q1-Q3: 68-80), and 69.3% were male. Occurrence of symptoms before seeking care was reported by 83.4%, while 15.3% reported incidental detection. The first physician consulted was most often a pulmonologist (51.5%) or internist/general practitioner (33.1%), and definitive diagnosis was mainly made by pulmonologists (89.0%). Before diagnosis, 76.5% had consulted at least two physicians or healthcare structures, and 33.1% reported prior misdiagnosis. Median symptom onset-to-diagnosis time was 10 months (2-24), diagnosis-to-treatment time was 3 months (1-6), and 87.1% received treatment after diagnosis. Among symptomatic non-incidental respondents, longer diagnostic delay was associated with prior misdiagnosis [16 vs 10 months; p=0.021], symptom non-recognition in primary care [14 vs 9.5 months; p=0.050], and delayed referral to a pulmonologist/ILD clinic [24 vs 10 months; p=0.010].
CONCLUSIONS: The PF patient journey in Greece involves multiple pre-diagnostic healthcare contacts, frequent misdiagnosis, and substantial diagnostic delays. Earlier recognition of PF and streamlined referral to interstitial lung disease-specialist care may improve timely diagnosis and treatment initiation.
METHODS: A cross-sectional, self-reported 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 or caregivers on behalf of patients. Data was collected using a structured online questionnaire aimed to capture the patient-reported diagnostic and early management pathway. The questionnaire covered type of diagnosis, time of symptom onset, care-seeking route, specialty of physicians consulted, misdiagnosis, referral barriers, time-to-diagnosis, and treatment initiation. Symptom onset-to-diagnosis time was examined in symptomatic respondents without incidental detection.
RESULTS: Among 163 participants, 65.0% reported idiopathic PF and 35.0% other PF diagnoses. Median age was 74 years (Q1-Q3: 68-80), and 69.3% were male. Occurrence of symptoms before seeking care was reported by 83.4%, while 15.3% reported incidental detection. The first physician consulted was most often a pulmonologist (51.5%) or internist/general practitioner (33.1%), and definitive diagnosis was mainly made by pulmonologists (89.0%). Before diagnosis, 76.5% had consulted at least two physicians or healthcare structures, and 33.1% reported prior misdiagnosis. Median symptom onset-to-diagnosis time was 10 months (2-24), diagnosis-to-treatment time was 3 months (1-6), and 87.1% received treatment after diagnosis. Among symptomatic non-incidental respondents, longer diagnostic delay was associated with prior misdiagnosis [16 vs 10 months; p=0.021], symptom non-recognition in primary care [14 vs 9.5 months; p=0.050], and delayed referral to a pulmonologist/ILD clinic [24 vs 10 months; p=0.010].
CONCLUSIONS: The PF patient journey in Greece involves multiple pre-diagnostic healthcare contacts, frequent misdiagnosis, and substantial diagnostic delays. Earlier recognition of PF and streamlined referral to interstitial lung disease-specialist care may improve timely diagnosis and treatment initiation.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR139
Topic
Health Service Delivery & Process of Care, Patient-Centered Research, Real World Data & Information Systems
Topic Subcategory
Patient Behavior and Incentives
Disease
Rare & Orphan Diseases, Respiratory-Related Disorders (Allergy, Asthma, Smoking, Other Respiratory)