Q&A: Online resource aids patients newly diagnosed with pulmonary fibrosis
Key takeaways:
- “PF Basics: Info for Newly Diagnosed Patients” was created by the Pulmonary Fibrosis Foundation.
- The resource contains six modules on various topics pertaining to the disease.
Receiving a diagnosis for any disease/condition is not an easy experience. One organization hopes to make patients newly diagnosed with pulmonary fibrosis feel supported during this time via a new online educational resource.
The resource, “PF Basics: Info for Newly Diagnosed Patients,” was created by the Pulmonary Fibrosis Foundation (PFF) as a one-stop shop for information that patients need as they navigate life and medical care following diagnosis, according to a press release.
The resource contains six modules on different topics related to PF and is self-guided, which the webpage says allows patients to start with whichever module they want.
Healio spoke with Kate Gates, BA, MSc, vice president of advocacy and programs for the PFF, to learn more about this resource, the factors that went into consideration when building it and how it can also benefit patients who have been living with PF for some time.
Healio: What inspired the creation of this educational resource?
Gates: We developed this resource based on direct feedback from members of our community who shared their experiences as newly diagnosed patients. They described feeling overwhelmed and alone after learning they have PF or ILD. The unfamiliarity and seriousness of these diagnoses left patients with tremendous anxiety. Our goal is to support patients throughout their journey by providing valuable information and sharing relatable stories from others once a diagnosis is made.
Healio: What factors went into consideration when building this program? How did you obtain the information that is presented in the modules (PFF members, trusted websites, etc)?
Gates: We considered a number of factors when developing this program, recognizing that each individual’s journey is unique. We wanted to deliver the program in a format that allows patients to review modules at their own pace. Our team, made up of staff from education, programs, marketing and communications, and the PFF medical team worked collaboratively to identify and develop content. Our chief medical officer, Amy Hajari Case, MD, FCCP, was instrumental in guiding the development of the modules. We also engaged with patients throughout the process to gather and incorporate their feedback at every stage.
Healio: What do you hope newly diagnosed patients with PF gain from engaging with this program?
Gates: We want to empower patients with the knowledge and support they need on their PF journey. A strong, wonderful community of support available for both patients and their loved ones means no one has to face PF alone.
Healio: How does this program also benefit clinicians who care for patients with PF?
Gates: Clinicians can direct newly diagnosed patients to this program for comprehensive information ranging from how PF is monitored to treatment options to research and clinical trials.
Each module features a patient story and links to in-depth content such as webinars and sessions from the PFF’s biennial conference, PFF Summit. By gaining knowledge and connecting with a community of other patients, newly diagnosed individuals can find inspiration and support, empowering them to navigate their care with greater confidence.
Healio: Does this program offer any benefits for patients who already have been living with PF for some time?
Gates: Yes, in fact, Module 5 is focused on living with pulmonary fibrosis. This module features specific things patients can do to maintain and improve their quality of life while living with PF. Other modules, such as PFF Support and Resources and Research and Clinical Trials, may be helpful to patients that have been living with PF who may not be aware of or have not yet explored these options.
Healio: Which module is your favorite and why?
Gates: This is a tough question but if I had to choose, I’d say Module 1. It is the launch point for the program and covers essential information that every new patient would find valuable. This module provides important definitions of PF and ILD and the various types of disease. It also addresses familial PF and the question of life expectancy, topics that are on every patient's mind.
Healio: Does the PFF have plans for additional educational resources?
Gates: Yes, we plan to create a new resource for people affected by familial pulmonary fibrosis. Unfortunately, many people affected by PF also have other family members affected by the disease. We plan to create a resource to provide more information for people with multiple family members diagnosed with PF.
We also plan to create a resource on pulmonary hypertension associated with PF. Pulmonary hypertension is a condition in which high blood pressure develops in the pulmonary arteries (blood vessels in the lungs). PF can cause pulmonary hypertension in some patients, so we plan to develop a resource to help provide diagnosis and treatment information.
We encourage people impacted by PF to connect with the Pulmonary Fibrosis Foundation. A great first step is to subscribe to the PFF’s e-newsletter, where they’ll receive updates on a range of topics, including new clinical trials, treatment options, support groups, special events, webinars and more. In addition, the Foundation’s social media channels (@PFFORG) on LinkedIn, Instagram and Facebook offer an opportunity to engage with both the Foundation and the broader community.
For more information:
Kate Gates, BA, MSc, can be reached at kgates@pulmonaryfibrosis.org.
References:
- PFF launches education program for newly diagnosed patients. https://www.pulmonaryfibrosis.org/about-us/news-and-media/news/article/2024/11/13/pff-launches-education-program-for-newly-diagnosed-patients. Published Nov. 13, 2024. Accessed Jan. 10, 2025.
- PF basics: Info for newly diagnosed patients. https://www.pulmonaryfibrosis.org/understanding-pff/newly-diagnosed/getting-started. Accessed Dec. 16, 2024.