Educational Needs of General Public + Patients and Role of Patient Advocacy Organizations

Surgeon General's Workshop on Deep Vein Thrombosis

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 SLIDE 1: No title

Graphic - “A Bleed makes you swell”

Graphic - “A Clot makes you shrink”

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 SLIDE 2: Educational Needs of General Public + Patients and Role of Patient Advocacy Organizations

Stephan Moll, MD
Heme-Coag
University of North Carolina
Chapel Hill, N.C.

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 SLIDE 3: Venous Clots

Illustration of Pulmonary embolism and Deep vein thrombosis

Pulmonary embolism (PE)

• short of breath
• chest pain
• cough
• bloody sputum

Deep vein thrombosis (DVT)

• swollen
• painful
• warm
• blue-purple

Illustration of Arterial Clots

• Stroke
• Heart attack
• Gangrene

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 SLIDE 4: Risk Factors for Clots

Arterial

• smoking
• overweight
• high cholesterol
• high blood pressure
• diabetes

Venous

• immobility (overweight)
• surgery, trauma
• hormones
• cancer
• inherited or acquired clotting abnormalities

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 SLIDE 5: How to prevent / treat clots

Illustration of clots done by an 8-year-old

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 SLIDE 6: The Public: Lack of Awareness

• APHA 2002
• Telephone survey
• 1,003 U.S. adults
• 74% of the public have little or no awareness of DVT;
• 54% do not know any symptoms of DVT;
• 57% cannot name any common risk factors for DVT

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 SLIDE 7: The Patients: Education Needs

Bar chart - A study entitled "Education Needs of Patients and Families With Thrombosis and Thrombophilia: Results From Two Patient Education Seminars" found that patients and families wanted to learn more about:

• prevention and treatment of blood clots;
• symptoms and signs of blood clots;
• risk factors for blood clots.

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 SLIDE 8: Availability of Education Materials

Bar chart - A study performed in 2004 entitled: "Availability of Educational Materials for Patients and Families with Thrombosis and Thrombophilia-A Review of Printed and Web-Based Literature" found that:

• some material on blood clots and clotting disorders written for patients and public is available, but that inadequate or no materials are available on a number of other relevant topics, such as:
  • DVT prevention issues
  • contraceptives and risk for thrombosis
  • hormone replacement therapy and thrombosis
  • psychosocial aspects of thrombosis
  • individual thrombophilias such as prothrombin 20210 mutation
  • Genetic testing issues in thrombophilia

Based on these findings, the patient advocacy group NATT started to create some of these missing educational materials And created a website (www.nattinfo.org) to make these and other education materials widely available. Other education materials are presently in development.

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 SLIDE 9: Availability of Education Materials

• www.nattinfo.org, 501c3 non-profit
• www.fvleiden.org, Non-profit, patient-run
• www.clotcare.org, ClotCare. Multiple sponsors
• www.dvt.net, Sanofi-Aventis sponsored
• www.preventdvt.org, Sanofi-Aventis sponsored

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 SLIDE 10: Thrombosis Prophylaxis

Is there a need for behavioral modifications for the prevention of DVT?

• Exercise may be
• Nutrition may be
• Hydration may be
• Obesity may be
• Smoking may be

Formal research on whether modification of these factors decreases the risk of DVT is lacking

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 SLIDE 11: Role of Patient Advocacy Groups

A. Education (Public – Patients – Health Care Providers)

• Helping assess the true education needs through formal research;
• Creating and distributing education messages and materials for public and patients through:
  • education seminars
  • printed material
  • websites
  • getting media interested
• Assisting in educating various health care provider groups.

B. Prophylaxis and treatment (portions redacted)

• Scientific studies: Encouraging the development for at-risk populations;
• Therapy standards: Encouraging the development (example: patients undergoing gastric bypass surgery);
• Making existing therapy standards available to all health care providers;
• National DVT prophylaxis guidelines: Participation + endorsement (example: NQF-JCAHO);

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 SLIDE 12: NATT’s activities as viewed by me

• Good and competent leadership – Mark Jablonski, Chicago;
• Effective Education subcommittee (Chair Liz Varga, Columbus, OH);
• Collaborative approach (CDC, CDC-funded Thrombophilia Pilot Site group, ASH, AC Forum, HTRS, NHF, NHLBI, DVT Coalition, Venous Forum, pharmaceutical companies, etc.);
• Non-profit, 501c3, neutral
• Short of money – needs full-time staff
• Short of money – needs full-time staff

Key needs in next 3 years:

• Successful fundraising
• More volunteers to get involved to do the work

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 SLIDE 13: Role of Patient Advocacy Groups

Drawing of DVT done by a 6 year old.

• Knowledge
• Awareness
• Prevention
• Treatment
• Support

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