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Pulmonary Fibrosis Patient/Caregiver
Experience Survey
PFF Summit 2015
November 14, 2015
2
► Background: Inspire and Pulmonary Fibrosis
Patient/Caregiver Experience Survey
► Survey Insights
• Living with PF
• So...
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
‘Bor...
5
 Purpose: To bring the perspectives of
those with Pulmonary Fibrosis (PF) and
their caregivers to life on a large scale...
6
 Of the 371 PF patients and caregivers who responded to this survey:
PF Patient/Caregiver Experience Survey
Respondent ...
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 n...
9
 68% of PF patients responding to the survey indicated that they have a family
member or friend who helps them manage t...
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 ...
12
 Patients and caregivers most frequently reported utilizing the electronic/online
resources provided by the Pulmonary ...
13
 Overwhelmingly, when those with PF or their caregivers turn to any of the
previously reviewed sources of information,...
Survey Insights: Managing PF
15
 Those with PF are highly involved in the treatment decision making process –
primarily responsible for initiating the...
16
 Nearly 80% of all PF patients/caregivers perceived some downside to their
current treatment, most notably, the side e...
17
 Awareness of the two new treatments approved by the FDA for Idiopathic
Pulmonary Fibrosis last October is very high, ...
18
 While nearly 1/3rd of respondents indicated that living longer was the most
important treatment outcome, patients and...
Q & A
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Pulmonary Fibrosis Patient/Caregiver Experience​ Survey

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The "Pulmonary Fibrosis Patient/Caregiver Experience​ Survey" explored the experiences of people affected by pulmonary fibrosis. Inspire conducted the survey in cooperation with its partner, the Pulmonary Fibrosis Foundation (PFF). Inspire CEO Brian Loew presented the findings during the PFF Summit in Nov. 2015 in Washington, DC.

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Pulmonary Fibrosis Patient/Caregiver Experience​ Survey

  1. 1. Pulmonary Fibrosis Patient/Caregiver Experience Survey PFF Summit 2015 November 14, 2015
  2. 2. 2 ► Background: Inspire and Pulmonary Fibrosis Patient/Caregiver Experience Survey ► Survey Insights • Living with PF • Sources of Information • Managing PF ► Q & A Agenda 5 minutes 30 minutes 10 minutes
  3. 3. Background: Inspire and Pulmonary Fibrosis Patient/Caregiver Experience Survey
  4. 4. 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. 5. 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. 6. 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% 5% 5% 16% 40% 31% 6% 0% 20% 40% 60% 80% 100% 30-39 40-49 50-59 60-69 70-79 80+ Age of respondents 2% 7% 1% 2% 2% 5% 6% 74% 0% 50% 100% 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)
  7. 7. Survey Insights: Living with PF
  8. 8. 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 86% 75% 66% 63% 39% 39% 35% 34% 22% 0% 20% 40% 60% 80% 100% Physical fitness Ability to complete household tasks Social life Ability to work Relationships with family members Relationships with friends Finances Romantic relationships Other Life Areas Affected by PF n=371
  9. 9. 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 members 49% 26% Relationships with friends 47% 19% Ability to work 42% 25% Romantic relationships 38% 30% Finances 34% 19% Physical fitness 33% 25% Ability to complete household tasks 27% 31% Other 30% 89% 28% 13% 12% 2% 0% 20% 40% 60% 80% 100% 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
  10. 10. Survey Insights: Sources of Information
  11. 11. 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 % respondents Inspire 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% % respondents Google+ 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. 12. 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 % respondents PFF 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% % respondents PFF Summit 5% PFF Patient Communications Center 4% 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
  13. 13. 13  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 12% 11% 18% 23% 26% 33% 86% 87% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% 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 n=371
  14. 14. Survey Insights: Managing PF
  15. 15. 15  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/ca regiver In collaboration with doctor Mostly by doctor Mostly by patient/ca regiver How treatment decisions are made 1% 4% 72% 11% 12% 56% 10% 18% 7% 9% At every visit Every other visit A couple times a year Once a year Never 0% 20% 40% 60% 80% 100% Who initiates treatment discussions Patient Doctor Caregiver Nurse Other 47% 33% 14% 1% 5% Frequency of treatment discussions n=371
  16. 16. 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 46% 28% 27% 21% 16% 6% 0% 20% 40% 60% 80% 100% Causes side effects It is costly Other No downsides Inconvenient to take Not covered by insurance 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. 17. 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. 18. 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 Important Live 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
  19. 19. Q & A

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