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Patient journey and treatment patterns in adults with IPF based on health care data in Sweden from 2001 to 2015
Karolinska Univ Hosp, Stockholm, Sweden;Karolinska Inst, Dept Med Solna, S-17176 Stockholm, Sweden.
IQVIA, Solna, Sweden;Karolinska Inst, Dept Med Epidemiol & Biostat, Stockholm, Sweden.
Genentech Inc, San Francisco, CA 94080 USA.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Lung- allergy- and sleep research.ORCID iD: 0000-0001-5093-6980
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2019 (English)In: Respiratory Medicine, ISSN 0954-6111, E-ISSN 1532-3064, Vol. 155, p. 72-78Article in journal (Refereed) Published
Abstract [en]

Background: For patients with idiopathic pulmonary fibrosis (IPF), there is limited real-world data on patient journey and treatment patterns.

Aim: To explore predictors of early diagnosis and treatment initiation, and treatment patterns in IPF patients using linked data from Swedish registers and electronic medical records (EMRs).

Population: A national cohort (C1) of 17,247 pulmonary fibrosis patients (ICD-10 code J84.1; no competing diagnosis) diagnosed between 2001 and 2015, and an EMR-based regional subset (C2) comprising 1755 IPF patients diagnosed between 2004 and 2017. The time from early disease symptoms to diagnosis, use of anti-fibrotic medications, time from diagnosis to initiation of anti-fibrotic treatment, and adherence, persistence and treatment length with pirfenidone were explored in these patients.

Results: In C1, the median time to diagnosis from the first symptoms dyspnoea, cough and fatigue were 307, 563 and 639 days, respectively. Glucocorticoids were the most frequently prescribed medication. Less than 10% of patients undergoing or initiating treatment, used pirfenidone or nintedanib. Males had a higher probability of initiating anti-fibrotic treatment than females within a year of diagnosis. One-year persistence in pirfenidone patients was 42% in C1 and 25% in C2.

Conclusion: Diagnosis of pulmonary fibrosis was delayed in patients with cough and fatigue, which are early symptoms of IPF. This, and lower than expected utilisation of anti-fibrotic medications, suggests missed opportunities for early disease diagnosis and treatment. The high rate of treatment discontinuation underscores the importance of supporting and guiding patients to persist with their medications to ensure an accrual benefit of treatment.

Place, publisher, year, edition, pages
W B SAUNDERS CO LTD , 2019. Vol. 155, p. 72-78
Keywords [en]
Idiopathic pulmonary fibrosis, Treatment patterns, Real-world evidence, Retrospective cohort, Sweden
National Category
Respiratory Medicine and Allergy
Identifiers
URN: urn:nbn:se:uu:diva-392573DOI: 10.1016/j.rmed.2019.06.001ISI: 000477923500015PubMedID: 31306950OAI: oai:DiVA.org:uu-392573DiVA, id: diva2:1349787
Available from: 2019-09-10 Created: 2019-09-10 Last updated: 2019-09-10Bibliographically approved

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