PFF program to aid people with new pulmonary fibrosis diagnosis
Educational effort features six modules patients can review at their own pace
The Pulmonary Fibrosis Foundation (PFF) has launched “PF Basics: Info for Newly Diagnosed Patients,” a new educational program to help patients with pulmonary fibrosis (PF) and interstitial lung disease get answers to the most pressing questions about their disease after a recent diagnosis.
“We heard from patients and caregivers that a guided approach could make a significant impact for those newly diagnosed with PF or ILD,” Scott Staszak, PFF’s president and CEO, said in a press release. “Our new PF Basics program connects patients and their families with the essential information they need at the start of their journey and reminds them that they are not alone.”
In PF, the lungs become scarred, causing shortness of breath, dry cough, and other symptoms. The disease is part of a larger group of respiratory conditions known as interstitial lung diseases that are marked by lung scarring, inflammation, or both. Because PF symptoms aren’t specific to the disease, diagnosing it accurately may be difficult, and involves a number of tests and visits to medical specialists before a treatment is initiated.
Living with the disease may also be challenging for patients and their families. Learning to handle lifestyle changes, manage loss of breath, and address emotional issues may help patients better navigate their daily activities and maintain or improve their quality of life.
Learning about the new diagnosis
The foundation is encouraging newly diagnosed patients to explore the program, which is made up of six online modules patients can review at their own pace and according to their interests. The program was created as part of a collaboration between the foundation’s medical team and the patient community to integrate medical expertise and real-world experience so recently diagnosed patients and families would have some needed guidance and support about this new phase of care.
The modules cover key questions and fundamental information about the disease, along with treatment options, medical care, support resources, important aspects of living with the disease, and the latest research and clinical trials.
The information is displayed as interactive text and informational videos. The modules also include patient stories and links that direct people interested in learning more about a particular subject to more in-depth information on the foundation’s website. The program has a suggested order for completing it, but patients can skip modules to reach the topic that interests them most.
“We invite you to explore this information in the way that works best for you,” the foundation states on the educational program’s webpage.
