PFF Offers Educational Resources for International Quality of Life Month

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by Patricia Inácio, PhD |

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In commemoration of the International Quality of Life Month happening in January, the Pulmonary Fibrosis Foundation (PFF) is calling attention to the educational resources it offers, which are designed to support and improve the lives of people with pulmonary fibrosis (PF).

“This January, start the New Year on a positive note by taking advantage of the many community resources, support, and information about emerging treatments available from the PFF. We want to help you cultivate a sense of hope, strength, and happiness in your daily life,” Joyce S. Lee, MD, senior medical advisor for research and health care quality at the PFF, said in a press release. “With these resources and an optimistic outlook, we can all live each day to the fullest!”

Across the U.S., the nonprofit counts 68 PFF Care Center Network sites and more than 150 support 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 patients’ health and improve their and their caregivers’ emotional wellbeing.

“Support groups can be an extremely valuable source of peer encouragement and inspiration for patients, caregivers, family members, and friends,” said Lee.

Due to the COVID-19 pandemic, meetings right now are being held online. Go here to find a virtual support group or PFF Care Center Network site in your area.

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The Struggles of Using Supplemental Oxygen As a Patient with PF

PF patients often have lower than normal levels of oxygen in their bloodstream. As the disease progresses and oxygen levels drop below 88%, supplemental oxygen therapy is often required. Initially, it can be given during specific periods, such as at night time, or when doing activities that require more effort. Later, oxygen therapy may be needed for longer periods.

Overall, the goal of such supplemental therapy is to prevent oxygen levels from dipping 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 embarking on oxygen therapy for the first time, to help ensure it’s being administered safely, either at home or when traveling. The guide also includes detailed information on accessible Medicare coverage of supplemental oxygen.

To help patients live a healthier, more active, and independent lifestyle, the PFF offers a Pulmonary Rehabilitation Toolkit with tailored videos explaining what it is and the benefits of pulmonary rehabilitation.

Rehabilitation programs use a comprehensive approach that includes exercise and mental health and nutritional therapy to enhance patients’ exercise capacity and health-related quality of life. A directory of pulmonary rehabilitation programs can be found here.

With research and clinical trials for PF on the rise, the PFF has taken the lead in helping patients get information on ongoing clinical studies, as well as the latest updates on therapeutic development. Among the foundation’s initiatives is the Clinical Trials Education Center, which includes a clinical trial finder tool and a drug development pipeline, where patients can learn about therapies being developed for PF.

Every month a Clinical Trials newsletter is released so that patients can stay up to date on enrolling trials.

“Now more than ever, there are opportunities for patients to participate in emerging treatments through clinical trials,” Lee said. “With active patient participation and collaboration with various funding agencies and investigators, the PF community will continue its efforts in improving the lives of the tens of thousands of patients living with this devastating disease.”

The PFF also advises patients to explore palliative care resources in their communities early on in the course of their illness, as a way to maximize their quality of life.