Patient-focused Educational Resources for PPF

It has been clearly established that well-written, comprehensive, patient-level education is essential for patients struggling with the debilitating symptoms of progressive interstitial lung diseases and the expectations of a shortened survival that impact physical and emotional well-being. This resource guide includes websites, publications, and other educational aids for clinicians to provide to patients with interstitial lung disease that is suspected or newly diagnosed to have a progressive phenotype. For patients with access to a computer and the internet, this list provides active links to patient-level information on disease background and pathophysiology, recently released guidelines for management of PPF, diagnosis, treatment, and information on living with PPF. For patients lacking access to a computer and/or the internet, these resources can be downloaded and provided as hardcopies.

General Patient Education

  • Education is a critical aspect of caring for patients with PPF
  • Surveys of patients with IPF, a progressive ILD, have found that:
    • Information about disease progression and what to expect is at the top of the list of educational needs1,2
    • Patients want to do their own research and use preferred websites as their primary means of acquiring disease-related information1,2
  • There are concerns about where to find trustworthy information1
    • Recent studies have found that information on the internet is often inaccurate, incomplete, and outdated3,4
  • Reliable sources of patient-centered information on PPF include:
    • The Pulmonary Fibrosis Foundation5
    • Pinpoint PF6


  • What is pulmonary fibrosis?5,6
  • What is progressive pulmonary fibrosis?5

New PPF Guidelines

  • New guidelines regarding the definition and diagnosis of PPF were recently approved by a group of societies (ATS, ERS, JRS, ALAT)7,8

Diagnosis of PPF

  • Diagnostic criteria for PPF5,8
  • Diagnostic algorithm for PPF9
  • ILDs associated with PPF5,8
  • Difficulty diagnosing pulmonary fibrosis10


  • Overview5
  • Approved5,11
  • Experimental5,12
  • Non-drug5,13

Living With Pulmonary Fibrosis

  • The challenges of living with pulmonary fibrosis and how to overcome them14
  • Information for caregivers5


  1. Ramadurai D et al. Understanding the informational needs of patients with IPF and their caregivers: 'You get diagnosed, and you ask this question right away, what does this mean?' BMJ Open Qual. 2018;7(1):e000207
  2. Ramadurai D et al. Idiopathic pulmonary fibrosis: Educational needs of health-care providers, patients, and caregivers. Chron Respir Dis. 2019;16:1479973119858961.
  3. Fisher JH.  Accuracy and Reliability of Internet Resources for Information on Idiopathic Pulmonary Fibrosis. Am J Respir Crit Care Med. 2016;194(2):218-225.
  4. Lashari BH et al. YouTube as a source of patient education in idiopathic pulmonary fibrosis: a media content analysis.  J Community Hosp Intern Med Perspect. 2019;9(2):98-102.
  8. Raghu G, et al. Idiopathic Pulmonary Fibrosis (an Update) and Progressive Pulmonary Fibrosis in Adults: An Official ATS/ERS/JRS/ALAT Clinical Practice Guideline. Am J Resp Crit Care Med. 2022;205(9):e18-e47.
  9. Cottin V, Valenzuela C. Progressive pulmonary fibrosis: all roads lead to Rome (but not all at the same speed). Eur Respir J. 2022;60(4):2201449.