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Plain language summary: Patient journey and treatment patterns in progressive pulmonary fibrosis

  • Nazia Chaudhuri
  • , Paolo Spagnolo
  • , Claudia Valenzuela
  • , Valeria C. Amatto
  • , Oliver-Thomas Carter
  • , Lauren Lee
  • , Mark Small
  • , Michael Kreuter

Research output: Contribution to journalArticlepeer-review

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Abstract

Plain Language Summary: What is this summary about? This study aimed to better understand the patient journey and treatment patterns in people living with progressive pulmonary fibrosis (PPF) from five European countries. Results from the study also provided insights into the best approach for diagnosing and treating patients with PPF. What were the results? Overall, 265 doctors provided data on 1,335 patients with PPF in France, Germany, Italy, Spain and the UK. A quarter of patients (25.2%) were in full-time employment. Of those not in full-time employment, about one in five (18.9%) were unable to work full-time due to interstitial lung disease (ILD). There was an average delay of 7.8 months between first symptoms of ILD and when participants consulted a doctor, and another 7.7 months on average to diagnosis of ILD. At the time of data collection, about half of the patients (47.7%) had moderate ILD and almost one in five (19.5%) had lung scarring that was getting worse, also known as progression. Overall, about eight out of ten patients (77.8%) were receiving treatment at the time of this survey. Almost one in six patients (15.6%) had not been prescribed treatment for ILD in the past. What do the results mean? This real-world study found delays in diagnosis and treatment gaps experienced by patients with PPF in Europe. Because this disease gets worse over time, delays in diagnosis may lead to poor outcomes, including shorter survival time. How to say… Corticosteroid: kaw-tuh-ko-stuh-royd Idiopathic pulmonary fibrosis: id-ee-uh-PATH-ik PUHL-muh-ner-ee fai-BROH-sis Immunosuppressive: i-myoo-no-suh-PREH-suhv Interstitial lung disease: in-tur-STISH-ul luhng dih-ZEEZ Mycophenolate: my-koe-PHEH-no-layt Nintedanib: nin-TED-a-nib Pirfenidone: pir-FEN-i-done Prednisone: PRED-nuh-zown Progressive pulmonary fibrosis: pruh-GREH-suhv PUHL-muh-ner-ee-fai-BROH-sis Pulmonologist: PUHL-muh-no-lo-gist Rheumatoid: roo-muh-toyd Rheumatologist: roo-ma-to-lo-gist Progressive pulmonary fibrosis (PPF): Lung scarring that gets worse over time, with a negative impact on lung function, quality of life and survival. Pulmonary fibrosis: A lifelong disease where lung tissue is damaged and/or scarred, causing difficulty breathing. This is an abstract of the Plain Language Summary of Publication article. View the full Plain Language Summary PDF of this article to read the full-text Link to original article here
Original languageEnglish
Article number2515006
Pages (from-to)1-13
Number of pages13
JournalFuture Rare Diseases
Volume5
Issue number1
Early online date7 Jul 2025
DOIs
Publication statusPublished (in print/issue) - 7 Jul 2025

Funding

This manuscript was funded by Boehringer Ingelheim GmbH. Boehringer Ingelheim was given the opportunity to review the manuscript for medical and scientific accuracy as well as intellectual property considerations.

    Keywords

    • survey
    • Lay summary
    • progressive pulmonary fibrosis
    • patient advocacy
    • patient experience data
    • real-world evidence
    • patient journey
    • interstitial lung disease
    • treatment
    • real-world study
    • plain language summary
    • patient characteristics

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