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

2. 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.

3. 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

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

5. Respondent Profile

6. Respondent Profile

7. Patient experiences

8. Patient experiences

9. Patient experiences

10. Patient experiences

11. 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%).

12. Patient experiences

13. Patient experiences

14. Clinical Trials

15. Clinical Trials

16. Clinical Trials

17. Clinical Trials

18. 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

19. Clinical Trials

20. 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%).

21. © 2015 Pulmonary Fibrosis Foundation. All rights reserved.

22. 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.