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Nationalizing Pulmonary
Embolism Support
Groups
Kathryn Mikkelsen, BA
Ruth Morrison, RN, BSN, CVN
Brigham and Women’s Hospital
Boston, MA
+ BACKGROUND
 The
incidence of DVT and/or PE is 1-2 per 1,000
adults per year in the Unites States alone.
 The
U.S. Surgeon General estimates that there are
100,000-180,000 fatal PE cases annually.
 Survivors
of DVT or PE may suffer from physical as
well as emotional challenges.
 More
people die each year from complications of
DVT then AIDS, breast cancer, and car accidents
combined.
+
PHYSICAL LIMITATIONS
 Chronic
venous insufficiency or post thrombotic
syndrome

Pain, swelling, tenderness
 Shortness
of Breath
 Pulmonary
 Chest
Pain
Hypertension
+
EMOTIONAL CHALLENGES
 Stress
 Anxiety
 Depression
 Panic
 Fear
attacks
of the unknown
 Financial
hardship
+ HISTORY OF BWH PE/DVT
SUPPORT GROUP
 Started
18 years ago by Dr. Samuel Z. Goldhaber and
Ruth Morrison, RN
 Over
160 members
 Meets
once every 4-6 weeks
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A typical meeting…
 Starts
promptly at 7:00 pm, adjourns at 8:15 pm
 Members
introduce themselves & share their
story (only if they feel comfortable)
 Guest
speaker (physical therapist, pharmacist,
nutritionist)
 Q&A
session
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ABOUT OUR MEMBERS
 Average
age is 59
 Majority
have experienced only 1 PE and/or
DVT
 Majority
experienced their first PE/DVT over 5
years ago
 The
most common emotional side effects they
mention are anxiety and frustration
+ What our PE Support Group
Members had to Say…
 “Learning
about the disease and that others have the
same problems. That there is help and support close
by.”
 “Information. For
instance, I learned about home
testing and now do that instead of going to the doctor's
office.”
 “Knowing
that life goes on pretty much as before for the
vast majority of patients with only minimal daily
inconveniences.”
 “I
like hearing about the current status of research in
this area.”
 “It
was extremely beneficial for me to hear that others
had similar fears that I had. Just being able to express
+ BENEFITS OF SUPPORT
GROUPS
 Allow
 Help
patients to share their experiences.
one another cope with the challenges they
face.
 Increase
knowledge, increase confidence, gain
support.
 Learn
up-to-date and accurate information.
+
OBJECTIVE
 To
promote the formation of multiple viable
pulmonary embolism (PE) Support Groups
across the United States and Canada.
 These
groups will focus on the unmet
educational needs of patients diagnosed with
deep vein thrombosis (DVT) or PE and their
families.
 The
Support Groups will foster patient
education, awareness and advocacy.
+ Goals
•Educate Healthcare Providers (HCPs) on
communication skills that allow them to better
counsel and educate patients in a support group
setting.
•Develop a PE Support Group blog which will
allow participating hospitals and support group
members from around the United States and
Canada to connect.
•Develop and employ a five-phase evaluation
instrument that measures patient participation,
learning, and whether psychological needs have
been understood and met.
•Publish a document on how to successfully
create and maintain a support group.
+
EDUCATIONAL TOOLS
 Facilitators
 Pamphlets
Guide
to promote Support Group to
Patients
 Blog
on the NATF website where HCPs and
patients can connect
 Monthly
newsletter
 Teleconference
with other hospitals starting PE
Support Groups
 Access
to Dr. Goldhaber and Ruth who have run
a successful support group for 18 years
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Time Commitment to Start/Maintain a
PE Support Group
 MD:
1 hour per 4-6 weeks to attend meetings, in
addition to recruiting patients.
 Nurses:
1 hour per 4-6 weeks to attend meetings,
in addition to recruiting patients.
 Administrative
Support: 1 hour per 4-6 weeks to
attend meetings, 1 hour per 4-6 weeks to reserve
meeting space, send out electronic invitations
using eVite and book guest speaker (if
applicable.)
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So, how are we doing?
•7 individuals in Canada
•22 through out the US
•First meeting scheduled to
begin May 2011
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Questions?