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The Pulmonary Embolism Support Group - Support for Individuals with DVT or PE

Ruth B. Morrison, RN, BSN, CVN
Editorial Note from Marie B. Walker
Updated January, 2013 Originally Posted January, 2007

Editorial Note: I have received numerous questions through ClotCare from DVT and PE patients who want to know where they can go for support. It seems that support groups for individuals with DVT and PE are few and far between. However, two of our editorial board members, Ruth B. Morrison, RN, BSN, CVN and Samuel Z. Goldhaber, M.D., organized a support group for their patients at Brigham and Women's Hospital, and it has been a huge success for over a decade. In January, 2007 I asked Ruth Morrison to share some information about the support group with the hope that the information provided could serve as a model for starting a support group in your own healthcare setting or community. Since that time, the North American Thrombosis Forum, a non-profit organization headed by Dr. Goldhaber, has made establishing national DVT and PE support groups a priority. As of January, 2013, NATF has established 5 active support groups in North America. For more information on the NATF initiative and the exisiting support groups, click here.

If you are not fortunate enough to have a support group in your area, then you may want to explore online support forums. Click here for more information on online support groups for DVT, PE, and related conditions.

The Venous Thromboembolism Research Group at Brigham and Women's Hospital addresses medical, nursing and psychosocial aspects of the care of patients diagnosed with pulmonary embolism (PE) and/or deep vein thrombosis (DVT). It is estimated that 600,000 patients are diagnosed with venous thromboembolism (VTE) each year and as many as 200,000 of these may be fatal. Our research focuses on prevention, diagnosis and treatment of these disorders. After caring for and consulting on hundreds of patients diagnosed with DVT/PE, it became apparent that many patients had numerous questions regarding not only their physical well being, but also their emotional health. In February 1993, we began the PE Support Group, meeting every third Wednesday evening for 75 minutes with a nurse and cardiologist functioning as group co-leaders. February, 2007 we will celebrate our 14 year anniversary, and participation has varied from three to as many as 25 people, mostly women. More recently we have seen a significant increase in attendance possibly due to the dramatic change in treatment of uncomplicated DVT and PE. The FDA approval of low molecular weight heparin has led to complete outpatient treatment of uncomplicated DVT and a decrease in length of hospital stay for patients diagnosed with uncomplicated PE. Although extremely cost-effective, this poses an enormous challenge for the physician and nurse to teach patients about the treatment, including self-injection of low-molecular weight heparin, and the initiation of Coumadin. Not to mention the definition of the disease, the implications such as the possibility of recurrence and preventative measures for the future. The group offers a supportive climate to share their common concerns and offers an opportunity to pose questions to the nurse-cardiologist co-leaders regarding contemporary developments in PE treatment and diagnosis and prevention.

Target Population:

Adult patients diagnosed with deep vein thrombosis, pulmonary embolism or both.

Educational Materials Utilized:

Pulmonary Embolism, A Patient's Guide, Frequently Asked Questions. Written in 1999. Needs revisions.

The Venous Thromboembolism Research Group at Brigham and Women's Hospital and the Pulmonary Embolism Support Group, Handout.

Goldhaber SZ, Morrison RB. Pulmonary Embolism and Deep Vein Thrombosis. Circulation. 2002;106:1436-1438.

Goldhaber SZ, Grasso-Correnti N. Treatment of Blood Clots. Circulation. 2002;106:e138-140.

Goldhaber, SZ, Fanikos, J. Prevention of Deep Vein Thrombosis and Pulmonary Embolism. Circulation. 2004:110e445-e447.

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