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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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