Pulmonary Fibrosis Patient/Caregiver Experience Survey PFF Summit 2015November 14, 2015

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► Background: Inspire and Pulmonary Fibrosis Patient/Caregiver Experience Survey

► Survey Insights• Living with PF

• Sources of Information

• Managing PF

► Q & A

Agenda5 minutes

30 minutes

10 minutes

Background: Inspire and Pulmonary Fibrosis Patient/Caregiver Experience Survey

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Inspire Background

Social network for PTs and CGs:

• ~680,000 members • 200+ communities

• ~110 advocacy org. partners

‘Born’ in 2005

Live in 2006

Member growth through:

• Organic search

• Advocacy groups

• Miscellaneous

Goal was to connect patients & caregivers

with one another

AND connect them directly with pharma

(clinical trials)

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Purpose: To bring the perspectives of those with Pulmonary Fibrosis (PF) and their caregivers to life on a large scale

Launch: After about a month of planning and coordination with the Pulmonary Fibrosis Foundation, Inspire sent invitation emails to members of the PF patient and caregiver communities.

Fielding: The survey was available for members to take from September 22nd – October 12th at which point we stopped accepting further responses.

Impact: During the nearly three week period in which the survey was available, 371 Inspire members completed the assessment.

Pulmonary Fibrosis Patient/Caregiver Experience Survey Background

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Of the 371 PF patients and caregivers who responded to this survey:

PF Patient/Caregiver Experience Survey Respondent Overview

75% 25%Patients Caregivers

39% 61%

30-39 40-49 50-59 60-69 70-79 80+0%

20%

40%

60%

80%

100%

5% 5%16%

40%31%

6%

Age of respondents

I don’t know/remember

Other (please specify):

Idiopathic interstitial pneumonia (IIP)

Sarcoidosis

Idiopathic non-specific interstitial pneumonia (NSIP)

Hypersensitivity pneumonitis (HP)

Connective tissue disease associated interstitial lung disease (CTD-ILD)

Idiopathic pulmonary fibrosis (IPF)

0% 20% 40% 60% 80% 100%

2%

7%

1%

2%

2%

5%

6%

74%

Survey Insights: Living with PF

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There is a difference in patient and caregiver perception of the impact of PF on patients’ lives; interestingly, but not surprisingly, caregivers feel there is a greater impact of PF on their loved one than those with the disease

Perceived Impact of PF on Patients

On a scale of 1 to 7, the average perceived impact of PF on their lives as reported by patients was 5.04

On the same 1 to 7 scale, the average perceived impact of PF on patients’ lives as reported by caregivers was 6.0

Physica

l fitness

Ability t

o complete household ta

sks

Socia

l life

Ability t

o work

Relationships with

family

members

Relationships with

friends

Finance

s

Romantic relationships

Other0%

20%

40%

60%

80%

100% 86%75%

66% 63%

39% 39% 35% 34%22%

Life Areas Affected by PF

n=371

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68% of PF patients responding to the survey indicated that they have a family member or friend who helps them manage their condition

Perceived Impact of PF on Caregivers

Patient Perceptions

Caregiver Perceptions

54% Social life 64%14% Relationships with

family members49%

26% Relationships with friends

47%

19% Ability to work 42%25% Romantic

relationships38%

30% Finances 34%19% Physical fitness 33%25% Ability to

complete household tasks

27%

31% Other 30%

Spouse/partn

er

Adult child

Other family

member

Friends

Other0%

20%

40%

60%

80%

100% 89%

28%13% 12%

2%

Who is a caregiver?

Patients and caregivers also have varying opinions on the impact of PF on caregivers’ lives – while the average

perceived impact reported by caregivers on a scale of 1 to 7, was 5.46, patients indicated it was lower, 4.47, on average

n=371

Survey Insights: Sources of Information

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Those affected by PF most frequently reported turning to Inspire, their doctor(s), online search engines and the PFF website for information about the disease

Sources of Information Used for PF

% respondentsInspire 78%

Physician or healthcare provider 48%Online search engines (e.g.,

Google, Bing)40%

PFF Website (Pulmonaryfibrosis.org)

34%

Medical/scientific articles 30%Blogs 29%

Materials provided by the doctor’s office

28%

Other PF patients 26%American Lung Association

website (Lung.org)25%

WebMD 24%

% respondentsGoogle+ 19%

Mayo Clinic 19%Nim.nih.gov 15%

In-person patient support groups

14%

Nurses 14%Friends and family 13%

Books or magazines 12%PatientsLikeMe 12%

Medicinenet.com 5%Videos 5%

YouTube 5%Other 4%

Pinterest 1%

n=371

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Patients and caregivers most frequently reported utilizing the electronic/online resources provided by the Pulmonary Fibrosis Foundation from its vast ‘library’ of sources

Other PFF-Provided Informational Outlets

% respondentsPFF Monthly eNewsletter 17%

PFF Disease Education Webinars 14%PFF Breathe Bulletin (print) 12%

PFF Disease Awareness Brochure (electronic)

10%

PFF Facebook page 10%PFF Disease Awareness Brochure

(print)5%

PFF Patient Information Guide (electronic)

5%

PFF Patient Information Guide (print)

5%

% respondentsPFF Summit 5%PFF Patient

Communications Center4%

Support Group Leader Network

3%

PFF Twitter account 2%PFF Annual Report

(electronic)2%

PFF Ambassador Program 1%PFF Instagram 1%PFF LinkedIn N/A

n=371

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Overwhelmingly, when those with PF or their caregivers turn to any of the previously reviewed sources of information, they are looking for either treatment-specific information or information about the disease itself

Information Sought by PF Patients and Caregivers

Other

Insurance reimbursement support materials

Information on pharma-sponsored, patient support programs

Support materials for others detailing PF and its symptoms

Tips/tactics around better ways to communicate with physician(s)

Information on patient support groups

PF disease-specific information

PF treatment-specific information

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

12%

11%

18%

23%

26%

33%

86%

87%

n=371

Survey Insights: Managing PF

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Those with PF are highly involved in the treatment decision making process – primarily responsible for initiating the discussion and a key driver in the decision

Discussing and Choosing PF Treatments

Entirely by doctor

Entirely by patient/caregiver

In collaboration with doctor

Mostly by doctor

Mostly by patient/ca

regiver

How treatment decisions are made

1% 4% 72% 11% 12%

At every visit

Every other visit

A couple times a

year

Once a year

Never0%

10%20%30%40%50%60%70%80%90%

100%

56%

10%18%

7% 9%

Who initiates treatment discussions

Patient Doctor Caregiver Nurse Other

47% 33% 14% 1% 5%

Frequency of treatment discussions

n=371

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Nearly 80% of all PF patients/caregivers perceived some downside to their current treatment, most notably, the side effects they’ve experienced• Based on their open-ended “Other” responses, there is an undertone of wanting

treatments to do more/be better • As seen in other conditions, patients and caregivers know there isn’t a cure for PF, but

that doesn’t diminish the hope that something close becomes available

Perceived Downsides to Current Treatment

Causes s

ide effects

It is c

ostlyOther

No downsides

Inconven

ient to ta

ke

Not covered by in

surance

0%

20%

40%

60%

80%

100%

46%

28% 27%21%

16%6%

n=371

“Other” reported downsides to current PF treatments were

largely further descriptions of these issues (e.g. “severe

side effects”) or dealt with issues

pertaining to non-prescription

treatment (i.e. oxygen therapy)

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Awareness of the two new treatments approved by the FDA for Idiopathic Pulmonary Fibrosis last October is very high, greater than 80% for each brand – the majority of those aware of these products have taken some follow-up action

Awareness of New IPF Treatments

92%

83%

Esbriet

Ofev

Esbriet Ofev

38% Asked physician whether the brand would be right for me/patient

39%

13% Have not taken any action since learning about the brand

28%

13% Made an appointment to see physician 8%

19% Other 13%

29% Searched for the brand using a search engine 31%

17% Spoke with family and friends about the brand

11%

42% Started using the brand for the treatment of idiopathic pulmonary fibrosis

23%

12% Talked to a nurse about the brand 8%

5% Talked to pharmacist about the brand 7%

33% Visited the brand website 34%n=276

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While nearly 1/3rd of respondents indicated that living longer was the most important treatment outcome, patients and caregivers also ranked stopping disease progression high on their list

PF Treatment Priorities

Most ImportantLive longer 30%

Stop disease progression 26%

Have a better quality of life 16%

Prevent acute exacerbations 15%

Slow disease progression 9%

Be more active 6%

n=371

Q & A