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
Background
- 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
Treatment
- 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
References
- 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
- Ramadurai D et al. Idiopathic pulmonary fibrosis: Educational needs of health-care providers, patients, and caregivers. Chron Respir Dis. 2019;16:1479973119858961.
- 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.
- 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.
- https://www.pulmonaryfibrosis.org/patients-caregivers/education-resources/other-educational-resources
- https://www.aboutpf.org/
- https://www.pulmonologyadvisor.com/home/topics/restrictive-lung-disease/updated-practice-guideline-ipf-and-progressive-pulmonary-fibrosis/
- 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.
- 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.
- https://pulmonaryfibrosisnews.com/pulmonary-fibrosis-diagnosis/
- https://pulmonaryfibrosisnews.com/approved-treatments-for-pulmonary-fibrosis-2/
- https://pulmonaryfibrosisnews.com/experimental-treatments-for-pulmonary-fibrosis/
- https://pulmonaryfibrosisnews.com/non-drug-treatments-for-pulmonary-fibrosis/
- https://pulmonaryfibrosisnews.com/living-with-pulmonary-fibrosis/