Title: Educational Needs for Patients and General Public
Author: UNC
Last saved by: Glen Bennett

Stephan Moll, MD. 
May 2^nd 2, 2006

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
smoll@med.unc.edu

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investigating these issues, (b) experience and conclusions from practicing individual health care providers, or (c) unpublished surveys or pharmaceutical marketing studies.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)  Hellman E.  et al 2003 ^1: 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 ^2: 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. 2006^3 : 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:
o	DVT prevention issues
o	contraceptives and risk for thrombosis
o	hormone replacement therapy and thrombosis
o	psychosocial aspects of thrombosis
o	individual thrombophilias such as prothrombin 20210 mutation
o	Genetic testing issues in thrombophilia
Based on these findings, the patient advocacy group NATT started to create some of these missing educational materials ^4-8 and created a website (www.nattinfo.org) to make these and other education materials ^9, ^10 widely available.  Other education materials are presently in development.

(b)	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.

(c)	Surveys 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 may be a risk factor for VTE, even though it has not been studied as a risk factor. 
•	Nutritional behavior modification: 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 – Mark Jablonski, Chicago;
•	has an effective Education subcommittee (Chair Liz Varga, Columbus, OH)
•	has a collaborative 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.
•	is a non-profit organization, funded by a variety of sources (private, industry), 
•	is, due to its non-profit status and due to the multitude of donors, neutral 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:

1.	Hellmann EA, Leslie ND, Moll S. Knowledge and educational needs of individuals with the factor V Leiden mutation. J Thromb Haemost 2003; 1:2335-9.
2.	Varga EA, Moll S. Education Needs of Patients and Families With Thrombosis and Thrombophilia: Results From Two Patient Education Seminars. AC Forum annual meeting, Orlando, FL, May 5th 2005. J Thromb Thrombolys 2006; 21:107.
3.	Varga EA, Moll S. Availability of Educational Materials for Patients and Families with Thrombosis and Thrombophilia-A Review of Printed and Web-Based Literature. AC Forum annual meeting, Orlando, FL, May 5th 2005. J Thromb Thrombolys 2006; 21:107.
4.	Varga EA, Moll S. Cardiology patient pages. Prothrombin 20210 mutation (factor II mutation). Circulation 2004; 110:e15-8.
5.	Varga EA, Sturm AC, Misita CP, Moll S. Cardiology patient pages. Homocysteine and MTHFR mutations: relation to thrombosis and coronary artery disease. Circulation 2005; 111:e289-93.
6.	Misita CP, Moll S. Cardiology patient pages. Antiphospholipid Antibodies. Circulation 2005; 112:e39-44.
7.	Varga EA. The genetics of thrombophilia. 2005. http://www.nattinfo.org/genetics-throm.pdf.
8.	Varga EA. Family testing for clotting disorders. 2005. http://www.nattinfo.org/fam-test.pdf.
9.	Goldhaber SZ, Morrison RB. Pulmonary embolism and deep vein thrombosis. Circulation 2002; 106:1436-8.
10.	Goldhaber SZ, Fanikos J. Prevention of deep vein thrombosis and pulmonary embolism. Circulation 2004; 110:e445-7.

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 counseling 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