# Presentation: 007170

## “A Bleed makes you swell”

**“****A ****Bleed**** makes you swell”**

## Educational Needs of General Public + Patients

**Role of Patient Advocacy Organizations**

**and**

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

## Venous Clots

**Venous Clots**

## Risk Factors for Clots

**smoking**
**overweight **
**high cholesterol**
**high blood pressure**
**diabetes**

_**Venous**_
**immobility (overweight)**
**surgery, trauma**
**hormones**
**cancer**
**inherited or acquired clotting abnormalities**

**Risk Factors for Clots**

## How to prevent / treat clots

**How to prevent / treat clots**

**Andrew, age 8**

## 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

**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**

**[APHA Survey 2003]**

**APHA 2002**
**Telephone survey**
**1,003 U.S. adults**

## The Patients:  Education Needs

**[Varga E. J Thromb Thrombolys 2006;21:107]**

**257 patients **
**attending 2 NATT education seminars (Denver, Detroit - 2004)**
**questionaire**

## Availability of Education Materials

**[Varga E. J Thromb Thrombolys 2006;21:107]**

**Review of printed and web-based education materials**
**Judged by defined criteria **
**12-2003 to 3-2004**
**5 members of NATT’s Education subcommittee ****(4 consumers, 1 health care provider)**

## Availability of Education Materials

**www.nattinfo.org**
**www.fvleiden.org**_** **_
**www.clotcare.org**
**www.dvt.net**
**www.preventdvt.org**

**501c3 non-profit**
**Non-profit, patient-run**
**ClotCare. Multiple sponsors**
**Sanofi-Aventis sponsored**
**Sanofi-Aventis sponsored**

## Thrombosis Prophylaxis

**Is there a need for **_**behavioral modifications**_** for the prevention of DVT?**
**Exercise**
**Nutrition**
**Hydration**
**Obesity**
**Smoking**

**may be**

**may be**

**may be**

**may be**

**may be**

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

## Role of Patient Advocacy Groups

**(Portions redacted)**

**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            **_
_**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);**

## 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**

## Role of Patient Advocacy Groups

**Role of Patient Advocacy Groups**

**Knowledge**

**Awareness**

**Prevention**

**Treatment**

**Support**