Pulmonary Fibrosis patient survey highlights quality of life issues

In a fitting crescendo to Global Pulmonary Fibrosis Awareness Month in September, the Pulmonary Fibrosis Foundation (PFF) submitted survey data from more than 1,100 patients and families suffering from pulmonary fibrosis (PF) to the U.S. Food and Drug Administration (FDA).

FDA used the survey information as part of its Patient-Focused Drug Development Meeting for Idiopathic Pulmonary Fibrosis on September 26. This is a new FDA initiative to seek patient input in order to better understand patients’ needs and expectations for therapeutic treatments.

The results of the survey go a long way towards helping FDA and the medical community better understand PF and its symptoms. For example, 25% of respondents indicated that they have seen no improvement in their condition based on their current treatment regimen.

“Insights such as this will help the FDA better assess quality of life issues when evaluating new therapies,” said PFF Chief Medical Officer Gregory P. Cosgrove, MD.

“Idiopathic pulmonary fibrosis affects approximately 200,000 people in the United States. It is extremely deadly with an average life expectancy of only two to four years from the time of diagnosis,” said PFF COO Daniel M. Rose, MD. “An estimated 40,000 Americans die each year from this disease.” 

Proper diagnosis, coupled with individualized treatment, can help patients cope with PF as researchers continue to seek treatments to slow the progression of the disease and eventually find a cure, according to the PFF.

“We applaud the FDA for focusing its attention on this devastating disease and for recognizing the importance of direct patient participation in this process,” said PFF President and COO Patti Tuomey. “We wholeheartedly support the FDA’s goal of including patients as an important component in the design and implementation of clinical trials."

Early survey results

More than 1,200 individuals have responded to the survey that was developed by PFF’s medical staff, pulmonary fibrosis thought leaders and former FDA officials. The survey is ongoing, but early results include:

• Shortness of breath and fatigue were the most severe symptoms (65% and 21%, respectively) that patients experienced. 

• Fifty-one percent of patients said that, because of their symptoms, they cannot participate in regular sporting activities.

• Because of their symptoms, 47% are unable to dance, 29% cannot garden, 19% cannot travel by airplane, 18% cannot walk up stairs, and 13% cannot drive.   

Meanwhile, PFF has posed a broader scope of questions that will help the organization better understand the unique needs of patients and families and will help guide future Foundation programs and initiatives.

The survey will be active through the end of the year, and any PF patient or caregiver can participate. To complete the survey, visit www.adgsurveys.com:8080/f/331806/34fb.