In celebration of International Quality of Life Month in January, the Pulmonary Fibrosis Foundation (PFF) is raising awareness of the educational resources it provides to support and improve the lives of people living with Pulmonary Fibrosis (PF).
“Start January on a positive note by taking advantage of the many community resources, support and information about new treatments offered by the PFF. We want to help you find a sense of hope, strength, and happiness in your daily life,” said Joyce S. Lee, MD, senior medical advisor for research and quality of care at the PFF, in a press release. “With these resources and an upbeat attitude, we can all enjoy each day to the fullest!”
In the USA, the non-profit organization has 68 PFF Care Center Network locations and more than 150 self-help groups. Connecting with other people with PF, as well as caregivers and family members, and being able to share experiences—and information and resources—can have a positive impact on patient health and improve the emotional well-being of both them and their caregivers.
“Support groups can be an extremely valuable source of peer encouragement and inspiration for patients, caregivers, family members and friends,” Lee said.
Due to the COVID-19 pandemic, meetings are currently taking place online. Go here to find a virtual support group or PFF Care Center Network website near you.
PF patients often have lower than normal levels of oxygen in their bloodstream. As the disease progresses and oxygen levels fall below 88%, supplemental oxygen therapy is often required. Initially, it may be given at specific times, e.g. B. at night or during activities that require more effort. Later on, oxygen therapy may be required for a longer period of time.
Overall, the goal of such complementary therapy is to prevent the oxygen levels from falling too low. It also helps patients maintain an active lifestyle.
The PFF has a step-by-step guide called “Oxygen Basics” with detailed instructions for those new to oxygen therapy to ensure it is administered safely, either at home or when travelling. The guide also provides detailed information about accessible Medicare coverage of supplemental oxygen.
To help patients lead healthier, more active, and independent lifestyles, the PFF offers a pulmonary rehabilitation toolkit with customized videos that explain what it is and the benefits of pulmonary rehabilitation.
Rehabilitation programs use a comprehensive approach that includes exercise, mental health, and nutritional therapy to improve patients’ physical capacity and health-related quality of life. A directory of pulmonary rehabilitation programs can be found here.
With increasing research and clinical trials for PF, the PFF has taken the lead in helping patients receive information on ongoing clinical trials as well as the latest updates on therapeutic development. The Foundation’s initiatives include the Clinical Trials Education Center, which includes a clinical trial locator tool and a drug development pipeline where patients can learn more about therapies being developed for PF.
A clinical trials newsletter is published each month to allow patients to stay informed about trial enrollment.
“Today, more than ever, there are opportunities for patients to participate in new treatments through clinical trials,” Lee said. “Through active patient involvement and collaborations with various funding agencies and researchers, the PF community will continue our efforts to improve the lives of tens of thousands of patients living with this devastating disease.”
The PFF also advises patients to explore palliative care resources in their communities early in the course of their illness to maximize their quality of life.