A National Survey of Pulmonary Fibrosis Patients and Caregivers PFF Survey A National Survey of Pulmonary Fibrosis Patients and Caregivers

Listening to the Community PFF strives to provide the highest quality programs with the most meaning for those impacted by or treating the disease PFF Patient & Caregiver Survey August 6 – November 25, 2014 Currently 1,068 respondents Patients Caregivers Online survey assisted by Michaels Opinion Research, Inc.

Listening to the Community How will survey information be used? Share aggregate data with the FDA to respond to questions posed to the community by the Agency Drive educational and legislative advocacy initiatives; create additional programs that accurately target needs Share information with the medical community

Patient experiences with PF Outline Patient experiences with PF Motivations and Barriers to Clinical Trials

Respondent Profile

Respondent Profile

Patient experiences

Patient experiences

Patient experiences

Patient experiences

Patient experiences When asked to assess the degree to which they have been disabled by PF, 72% of patients interviewed say they do, indeed, experience some limitations – 43% report a “slight disability,” are able to manage their own affairs without assistance, but are “unable to carry out all previous activities.” An additional 29% describe their disability as “moderate,” requiring “some help, but able to walk unassisted.” Patients under 65 are more likely than older patients to describe their symptoms as “moderate” (35% vs. 23%), as are women (34%) compared to men (23%).

Patient experiences

Patient experiences

Clinical Trials

Clinical Trials

Clinical Trials

Clinical Trials

Clinical trials Although three-in-four pulmonary fibrosis patients report reading or hearing about clinical trials, only 55% of those who are aware of clinical trials say their pulmonary fibrosis health care provider has discussed the trials with them. CONFIDENTIAL

Clinical Trials

Clinical Trials: Barriers to participation Women are more likely to report that their doctors’ lack of recommendation was “very important” in their decision not to participate in clinical trials, at 42%, versus 28% of men. They also report a much greater concern about unknown side effects than men (41% vs. 21%, respectively). Among patients who live alone, 50% say they chose not to participate in trials because of concern about disease progression if placed in a placebo group. But only 40% of those who live with others express the same concern. Patients under 65 are more inclined to report they didn’t participate in trials because of an inability to travel to the trial center (28%) compared to patients 65 and older (18%).

© 2015 Pulmonary Fibrosis Foundation. All rights reserved.

Contributors Patti Tuomey, Ed.D Michelle Michael Dolly Kervitsky Kevin Flaherty, MD David Lederer, MD Tristan Huie, MD Jeffrey Swigris, DO Zoe Bubany Mark Schreve The survey was supported by an unrestricted educational grant by InterMune.