**Educational Needs for the General Public and Patients, **

**and the Role of Patient Advocacy Organizations**

**University of North Carolina School of Medicine**

**Department of Medicine**

**Division of Hematology-Oncology**

**CB 7035**

**Chapel Hill, NC 27599**

**Phone: 919-966-3311**

**Fax: 919-966-7639**

**Background**

**Relatively little is known about the educational needs regarding deep
vein thrombosis of (a) the public, (b) patients in general, and (c)
patients with blood clots or clotting tendencies and their families.
However, such knowledge could lead to the development of educational
strategies and tools that could impact health outcomes, i.e. morbidity
and mortality from DVT and PE.**

**A. What are the Educational Needs of the General Public and of
Patients?**

**Our present knowledge as to what the educational needs of public and
patients are, has either been derived from (a) scientific studies
systematically investigating these issues, (b) experience and
conclusions from practicing individual health care providers, or (c)
unpublished surveys or pharmaceutical marketing studies. **

a.  ***Scientific studies ***\
    **Only very few systematic and scientific investigations have been
    performed to investigate what the educational needs of public and
    patients are. **\
    \
    **1) *He**llman E. ** et al 2003** *: A study entitled "Knowledge
    and satisfaction of information of individuals with Factor V Leiden"
    showed that individuals with known factor V Leiden: **

-   **often lack knowledge about many aspects of their condition;**

-   **often do not have good knowledge of the risk that they will
    develop a blood clot;**

-   **often do not realize that lifestyle choices can influence the risk
    of thrombosis;**

-   **often feel that their health care providers do not have adequate
    knowledge about thrombophilia;**

-   **are often not satisfied with the amount of information they
    receive about their condition from their health care provider;**

-   **often feel that there is a lack of educational resources available
    to learn about blood clots and clotting disorders. **

\
**2) *Varga E. 2006** **: *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.**

***3) **Varga E.** 2006** *: 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
() to make these and other education materials widely available. Other
education materials are presently in development.**

a.  ***Experience from individual health care providers***\
    **The majority of knowledge about the need of patients and public is
    probably derived from the individual experiences of health care
    providers, such as of the author of this article, from interacting
    with patients, patient's families, and the general public. By the
    nature of such experiences, this knowledge is incomplete and biased.
    Working as a hematologist-coagulationist in an active Thrombosis
    Clinic and on an inpatient coagulation consult service (at the
    University of North Carolina in Chapel Hill), and also having
    organized and participated in eight education seminars on deep vein
    thrombosis for patients and public in the last 4 years in N.C. and
    other parts of the U.S., the author of this article has observed
    consistent areas of lack of knowledge in the general public and in
    patients, such as:**

-   **lack of understanding of the difference of the difference between
    arteries and veins;**

-   **lack of knowledge of the symptoms of arterial clots and venous
    clots, and confusion between the two;**

-   **lack of understanding that a "clot in the leg" can be an arterial
    or venous problem;**

-   **lack of understanding that a "clot in the veins of the leg" can be
    a superficial venous clot (with less serious clinical implications)
    or a deep vein thrombosis (with more serious implications, such as
    risk for pulmonary embolism);**

-   **lack of knowledge what the difference is between an aneurysm and a
    clot;**

-   **lack of knowledge of risk factors for venous clots;**

-   **lack of understanding that aspirin does not significantly help
    reduce the risk of venous blood clots;**

-   **lack of knowledge about a person's family history of blood
    clots.**

a.  ***S**urveys and marketing studies***\
    **1) *APHA DVT Omnibus Survey 2002*: A survey was conducted by
    Wirthlin Worldwide in 2002 ("Deep Vein Thrombosis Omnibus Survey)
    for the American Public Health Association to determine the levels
    of blood clot awareness and knowledge associated with deep-vein
    thrombosis among the public in 2002. The survey results have not
    been formally published; however, they have been presented as an
    oral presentation at the first "DVT Coalition" meeting on February
    26,2003 in Washington, D.C. This study was a telephone survey of
    1,003 American adults. 48 % of these were women, 52 % men. 73 % were
    Caucasian, 12 % Black, 10 % Hispanic, and 5 % of other ethnicity and
    race. Fifty percent had a maximal education level of high-school
    diploma or less. The findings were that:**

-   **There is a lack of awareness of deep vein thrombosis:**\
    **Three-quarters (74%) of respondents are not aware of DVT, with
    half (50%) saying they are not at all aware and 24% saying they are
    not very aware. **

-   **There is a lack of awareness of symptoms of DVT:**\
    **One-half (54%) of total respondents are not aware of the symptoms
    of DVT. **

-   **There is a lack of awareness of risk factors of DVT:**\
    **Three-quarters (75%) of respondents do not know how DVT could be
    prevented**\
    **Over half (57%) of respondents cannot identify the common risk
    factors of DVT. **

-   **There is a lack of awareness of prevention methods for DVT:**\
    **Three-quarters (75%) of respondents do not know how DVT could be
    prevented. Knowledge was worse in men compared to women, in younger
    persons, and in individuals with a lower level of education.**

\
**2) *Market research studies by pharmaceutical companies*:
Pharmaceutical companies producing or developing blood thinning
medications (anticoagulants) likely have performed market research on
the public or on patients, but these results are not publically
available.**

**B. What is the role of advocacy organizations relative to raising
awareness about DVT and education (physician's perspective)? Portions
redacted.**\
\
**Patient advocacy groups can help raise the awareness by:**

-   **Assessing the true education needs of the public and of patients
    through formal research studies, so that the right audience can be
    targeted with the right messages;**

-   **Creating and distributing educational materials (print,
    audio-visual);**

-   **Organizing education seminars for public and patients (example for
    a program is listed in appendix 1);**

-   **Getting media (TV, newspapers, and magazines) interested in
    reporting about DVT;**

-   **Educating patients so that they can be proactive and have
    suggestions to their physicians for diagnosis and treatment
    (examples: patient at risk for DVT asks for DVT prophylaxis in risk
    situations; patient with postthrombotic syndrome asks for
    compression stockings, compression pump, or venous vascular stenting
    procedure).**

-   **Educating various health care provider groups about DVT by
    co-organizing health care provider thrombosis seminars (example for
    a program is listed in appendix 2);**

-   **Working with pharmaceutical companies to create messages for the
    general public and for patient subgroups (examples: companies
    producing birth control pills; companies with an oncology
    portfolio);**

-   **Encouraging the development of scientific studies defining at-risk
    population for DVT (example: study on gastric bypass surgery and
    DVT);**

-   **Encouraging the development of DVT prophylaxis therapy standards
    by health care providers for population subgroups (examples:
    patients undergoing gastric bypass surgery; pregnant women with
    clotting disorders).**

-   **Making therapy standards that have been created by health care
    providers available to all health care providers (through listing on
    a website; printing and distributing; co-sponsoring health care
    provider education seminars);**

-   **Participating in and endorsing national DVT prophylaxis
    activities, such as the presently ongoing NQF-JCAHO project;**

-   **Presenting the patients' voice and input at health-care provider
    or pharmaceutical company-driven national DVT prophylaxis
    activities, such as participating in the steering committee of the
    Sanofi-Aventis funded DVT Coalition;**

-   **Enabling patient support groups;**

**C. Is there a need for behavioral modifications for the prevention of
DVT -- exercise, nutrition, hydration, obesity?**

** Since it is not know whether modification of any of these risk
factors leads to a decreased rate of DVT, formal research should be
encouraged and done to demonstrate that such lifestyle changes really
have an impact on the DVT occurrence. **

-   **Obesity, smoking and immobility: While these are known risk
    factors for venous thromboembolism, it is not know whether lifestyle
    changes, such as loosing weight, discontinuing smoking or leading a
    more active lifestyle, actually decrease the risk for thrombosis.
    However, it is tempting to think that they may. There is a need to
    formally study whether behavioral modifications in this field really
    lead to a decreased rate of DVT.**

-   **[Dehydration]{.underline} may be a risk factor for VTE, even
    though it has not been studied as a risk factor. **

-   **[Nutritional behavior modification]{.underline}: This is an
    important issue for the patient being treated with warfarin, so that
    more steady intake of vitamin K may lead to more stable warfarin
    levels (INRs), to decrease the risk of DVT recurrence at times of
    sub-therapeutic INRs. However, this appears to be less important for
    the general prevention of DVT, as it is not know whether there are
    any dietary contributors to an increase risk of thrombosis, other
    than obesity (discussed above). **

D.  **The activity of the non-profit organization NATT (National
    Alliance for Thrombosis and Thrombophilia), as viewed by the author
    of this summary.**\
    \
    **The author of this summary is one of the founding board members of
    NATT and is the chairman of NATT's Medical and Scientific Advisory
    Board (MASAB). NATT formed in August 2003 and received its 501c3
    non-profit organization status in December 2005. The author's
    observations of NATT are as follows. NATT **

-   **has a good and competent [leadership]{.underline} -- Mark
    Jablonski, Chicago;**

-   **has an effective [Education subcommittee]{.underline} (Chair Liz
    Varga, Columbus, OH)**

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-   **has a [c]{.underline}[ollaborative]{.underline} approach,
    partnering and collaborating with **

    -   **CDC, **

    -   **CDC-funded Thrombophilia Pilot Site group, **

    -   **American Society of Hematology (ASH), **

    -   **Anticoagulation Forum (president Dr. Jack Ansell),**

    -   **Hemophilia and Thrombosis Research Society (HTRS; president
        Dr. Len Valentino)**

    -   **National Hemophilia Foundation (NHF),**

    -   **NHLBI, **

    -   **DVT Coalition, **

    -   **Venous Forum, **

    -   **pharmaceutical companies**

    -   **and others.**

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-   **is a [non-profit]{.underline} organization, funded by a variety of
    sources (private, industry), **

-   **is, due to its non-profit status and due to the multitude of
    donors, [neutral]{.underline} and unbiased,**

-   **needs further successful fundraising to hire part-time and,
    preferably, full-time staff to achieve all the goals it wants to
    pursuit.**

-   **has achieved a significant amount since its foundation less than 3
    years ago and appears to be on a successful track to further
    establishing itself as the premier non-profit patient advocacy group
    in the U.S., with the overarching goal to decrease morbidity and
    mortality from thrombosis.**

***Abbreviations:***

**DVT = deep vein thrombosis**

**MASAB = Medical and Scientific Advisory Board**

**NATT -- National Alliance for Thrombosis and Thrombophilia **

**PE = pulmonary embolism**

***References:***

***Appendix 1*: Sample program for a patient education seminar.**

***Education and Discussion Seminar on Blood Clots***

***Chapel Hill, Friday Center***

***March 2006***

**8:45 - 9:30 Registration, Coffee and Continental Breakfast**

**9:00 - 9:15 Introduction ...............\...\...\...\...\...\...\....
NATT Board of Directors**

-   **Who we are and what we want to accomplish**

**9:15 - 10:15 Blood Clots (thrombosis): Overview **\
***A.
Basics**...**...**...**...**...**...**...**...**...**...**...**...**...**..
**Tom Ortel, MD, Duke University, Durham***

-   **What are blood clots (venous versus arterial clots)**

-   **Why and how do they form?**

-   **Medications used to prevent and treat blood clots (thrombolytics,
    unfractionated heparin, low molecular weight heparins, aspirin,
    plavix, aggrenox, natural products, such as garlic, gingko,
    Nattokinase, etc.)**

-   **Everything you always wanted to know about warfarin (INR, diet,
    interaction with other medications, home INR monitoring devices)**

*** **B.
Specifics\...\...\...\...\...\...\....**\...\...\....**\...\...\...\...\...\...\...\...**.Stephan
Moll, MD, **UNC** Chapel Hill***

-   **Who is at risk **

-   **What symptoms do patients experience? What symptoms do parents
    notice?**

-   **How are clots diagnosed?**

-   **Medical treatment for patients with blood clots (thrombolytics,
    inpatient/ outpatient therapy, low molecular weight heparin, length
    and intensity of warfarin? Perioperative bridging)**

**10:15 -- 10:45. Patient Panel
.................................................... Moderator, Stephan
Moll, MD**

**10:45 - 11:00 Break **

**11:00 -- 12:00 Acquired and inherited clotting disorders ....
.............Nigel Key, UNC Chapel Hill**

-   **What everybody should know**

-   **How to prevent clots**

-   **Inherited and acquired clotting disorders**

-   **Pros and cons of genetic testing of patients, family members;
    testing of children**

-   **Clots and oral contraceptives, pregnancy, hormone replacement
    therapy**

-   **Prophylaxis in high-risk situations (surgery, hospitalization,
    pregnancy)**

-   **Pediatric issues **

**12:00 -- 12:30 OPEN DISCUSSION **

** 12:30 -- 1:15 LUNCH **

** 1:15 -- 1:45 OPEN DISCUSSION (continued) **

** 1:45 -- 2:30 .KEY ISSUES TODAY
...................................................NATT Board of
Directors**

-   **What are the key treatment issues today?**

-   **What are the key issues from a patient's/participant's
    perspective?**

-   **What are the key issues from a health-care provider's
    perspective?**

-   **How does NATT intend to address these issues?**

** 2:30 -- 2:45 WRAP-UP .........................................
....................... NATT Board of Directors**

-   **Local and Regional Resources**

-   **Diagnosis and Referrals**

-   **Other practical considerations specific to Michigan **

-   **How to support NATT**

-   **Start a local chapter**

-   **NATT's next steps**

***Appendix **2*: Sample program for a health care provider education
seminar.**

**NHF on the Road Spring 2006 - Minneapolis**

**Saturday Thrombophilia & Thrombosis Agenda for Healthcare Providers**

** *as of 2-6-06***

**8:30am -8:50am *Introduction* and welcome (NATT & NHF)**

**8:50am - 9:45am *Inherited vs. Acquired Thrombophilia** ***\
**Both inherited and acquired risk factors that increase the risk of
thrombosis will be reviewed. Controversies surrounding testing for
thrombophilia will be addressed. Treatment and management implications
of the inherited thrombophilias will be discussed. **

-   **Stephan Moll, MD, University of North Carolina, Chapel Hill, NC**

**9:45am -10:40am *Women**'**s **Health **Issues***\
**Hereditary or acquired defects in one or more of the clotting factors
can cause the formation of potentially dangerous blood clots. Clotting
disorders pose important problems for women because of the relationship
to reproductive issues. These problems include clotting complications of
pregnancy and recurrent fetal loss. The speaker will address the
heightened risks women face and the appropriate diagnosis and treatment
during their lifespan. **

-   **Andra James, MD, MPH, Women's Hemostasis and Thrombosis Clinic,
    Duke University**

**10:40am -10:50am BREAK**

**10:50am -11:20am *Genetic counsel**ing for the thrombophilias***\
**Role of the genetic counselor in testing and counseling for inherited
thrombophilias**

**Moderator: Elizabeth Varga, MS, The Ohio State University, Columbus**

-   **Matthew Bower, MS, Fairview University Medical Center**

**11:20am -12:15pm *Venous vs. Arterial Clots***\
**The treatment of thrombosis is based on an understanding of the
processes that lead to its development and propagation.  Arterial
thrombosis is characterized by platelet activation and responds to
anti-platelet therapy.  Venous thrombosis, by contrast, is a consequence
of coagulation factor activation and is best treated with anticoagulants
like heparin and warfarin.  Published management guidelines recommend
the preferential use of these anticoagulants to prevent and treat venous
thromboembolism.**

-   **Kathryn Hassell, MD, University of Colorado Health Sciences
    Center**

**12:15pm -1:15pm Lunch**

**1:15pm -- 2:10pm *Pediatrics***\
**Diagnosis, treatment and management of thrombosis and thrombophilia in
pediatric patients will be discussed. The approach in children will be
contrasted to that of the adult population.**

-   **Lisa Michaels, MD, Cancer Institute of New Jersey**\
    ** **

**2:10pm -- 3:05pm *Social Work/Social **Issues in Thrombophilia***\
**This session will look at the role of social work in thrombophilia.
There are many psychosocial issues and problem areas that go with this
diagnosis. We will also look at making the transition from working with
bleeding disorders to including thrombosis in the patient population. We
will also look at resources available to social workers. **

-   **Polly Partin-Welch, LISW, Cincinnati Children's Hospital Medical
    Center**

-   **Ann Chambers, RN(?),Cincinnati Children's Hospital Medical
    Center**

**3:05pm -3:15pm BREAK**

**PANEL DISCUSSION **

**3:15pm -4:30pm Discussion on Comprehensive Care Model in Thrombophilia
Moderator: Tom Ortel, Duke University**

**Panelists will discuss strategies for integrating thrombosis and
thrombophilia care into the comprehensive care model. Topics to be
addressed include: setting up a thrombosis clinic; educating consumers;
dealing with social issues including worker's compensation, disability
and monetary issues; and addressing genetic inheritance and family
testing.**

-   **RuthAnn Kirschman, NP, Mountain States Regional Hemophilia &
    Thrombosis Center**

-   **Lisa Michaels, MD, Cancer Institute of New Jersey **

-   **Elizabeth Varga, MS, The Ohio State University, Columbus **

-   **Jill Strykowski, Pharm D, Mercy and Unity Hospitals, MN**

-   **Kathryn Hassell, MD, University of Colorado Health Sciences
    Center**

-   **Robert McBane, MD, Mayo Clinic, Rochester, MN**

-   **Polly Partin-Welch, LISW, Cincinnati Children's Hospital Medical
    Center**

**4:30pm -- 5:30pm Wrap up**

**5:30pm -- 6:30 Reception**