Pulmonary Fibrosis Patient/Caregiver Experience Survey
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Transcript of Pulmonary Fibrosis Patient/Caregiver Experience Survey
Pulmonary Fibrosis Patient/Caregiver Experience Survey PFF Summit 2015November 14, 2015
2
► 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
4
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)
5
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
6
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
8
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
9
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
11
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
12
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
16
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)
17
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
18
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