National Blood Clot Alliance National Survey About Deep Vein Thrombosis and Pulmonary Embolism Awareness, Information, Prevention, Adherence Key Survey Findings for Healthcare Professionals in Oncology Made Possible By a Grant From Ortho McNeil™, a Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc.

National Blood Clot Alliance Patient Governing Board Board Volunteer based, patient led Volunteer based, patient ledSciencedrivenSciencedriven Medical & Scientific Advisory Board Medical & Scientific Advisory Board Dedicated to the prevention & quality treatment of blood clots and clotting disorders

Awareness Advocacy Stopthe Clot ® National Blood Clot Alliance

A Call To Action Spotlights public health urgency of DVT/PE Sets forth recommendations for diagnosis, prevention, treatment Suggests criteria for research, education, policy

Public Health Perspectives: Morbidity, Mortality Surgeon General’s General’s Call to Action 350, ,000 Americans have blood clots every year 100,000 deaths Mayo Clinic Data Heit et al. 900,000 Americans have blood clots every year 300,000 deaths

Perspectives in Oncology Active Cancer Increased DVT/PE Risk Absent Prophylaxis DVT 40-80% of surgical oncology patients Absent prophylaxis PE 4-10% of surgical oncology patients Mortality greater among DVT/PE cancer patients

Overview: The NBCA DVT/PE Awareness Survey Responds to Surgeon General’s Call to Action Benchmarks awareness, prophylaxis experiences Comprehensive, one of the largest of its kind

Methodology Development Questions (62) developed by Survey Steering Committee MASAB members, experts from at-risk clinical groups Implementation National survey firm Late Q409 Internet panels 2010 extensive evaluations 2011 data unveiled

Methodology AwarenessAwareness General Public 500 Cancer Dx within 12 mos 67% Dx or Tx within 6 mos Mean age female ProphylaxisProphylaxis InformationInformation AdherenceAdherence Inpatients 206 Outpatients 294 Oncology 500

Survey Participants: Cancer Diagnoses Included n=500 cancer patients

DVT/PE Awareness 24% 36% 24% 15% p=<.05%p<.05%

DVT/PE Awareness

Health Literacy: “Blood Clot” Awareness

Risk Factor Awareness Among Oncology Patients

Signs and Symptoms Awareness

Provision of Information by MDs, Other HCPs p=<.05% 44% 27%

Patient-Reported VTE Prophylaxis Experiences 35% p=<.05% p=<.10% p=<.05% 28% 21% 16% 52% 31% 38% 39% 52% 31%

Key Findings: Inpatient Versus Outpatient Disparity Inpatient Outpatient Awareness Information Prophylaxis Joint Commission CMS

Additional Findings: Adherence Among Oncology Patients Of 105 warfarin users, 31% say Tx is very/moderately difficult to use 42% blood testing, 39% dosing changes, 36% dietary restrictions Of 81 LMWH users, 38% say Tx is very/moderately difficult to use 52% self injection, 45% help needed, 42 caregiver burden + injection site pain 73% of warfarin users and 86% of LMWH users report adherence Non-Adherence: Warfarin n=17, LMWH n=7 >70% MD advised

Additional Findings: Information and Education 73% said they were not informed or educated by MD or other HCP about potential DVT due to cancer 68% said neither physician nor other HCP discussed what can happen if a blood clot forms 66% said neither doctor nor HCP discussed ways that blood clots can be prevented

Additional Findings: Oncology Patient Preferences Therapeutic Options Cited by Patients to Optimize Treatment 42% fewer Rx interactions 41% minimal bleeding complications, 36% pill instead of injection Information Sources Preferred by Patients 85% doctor, 73% Internet 37% nurses, 29% advocacy organizations, 20% family members Educational Tools Preferred by Patients Just 15% received materials, brochures most common More than 90% prefer Web sites and books

Conclusions and Future Directions Improve patient awareness of DVT/PE, simplify terms Optimize education programs/ prophylaxis among patients Research new therapies to address treatment barriers Improve patient/MD dialogue about risks & prevention Risk ≠ awareness “Blood clot” resonates Risk ≠ awareness “Blood clot” resonates Information gaps exists Outpatients: significantly greater Information gaps exists Outpatients: significantly greater Treatment barriers identified Patients report adherence Treatment barriers identified Patients report adherence Prophylaxis varies Underutilized among outpatients Prophylaxis varies Underutilized among outpatients Awareness Information Prophylaxis Adherence

Reduced risks and reduced complications Reduced risks and reduced complications Improved DVT/PE understanding and prophylaxis Improved DVT/PE understanding and prophylaxis Decreased morbidity, mortality, costs Imperatives Moving Forward

Thank You for Your Commitment The National Blood Clot Alliance thanks you for your commitment to DVT/PE education and prevention, and for your ongoing efforts to help us Stop the Clot ®

Jack E. Ansell, MD - Steering Committee Chair Chairman, Department of Medicine, Lenox Hill Hospital, Professor of Medicine, New York University School of Medicine, New York, NY Alan P. Brownstein, MPH Chief Executive Officer, National Blood Clot Alliance, Tarrytown, NY Richard J. Friedman, MD, FRCSC Chairman, Department of Orthopaedic Surgery, Roper Hospital, Clinical Professor of Orthopaedic Surgery, Medical University of South Carolina, Charleston, SC Greg A. Maynard, MD, MSc, SFHM Chief, Division of Hospital Medicine, University of California, San Diego, CA Frederick R. Rickles, MD Professor of Medicine, Pediatrics and Pharmacology and Physiology, The George Washington University, Washington, DC Elizabeth A. Varga, MS, CGC Certified Genetic Counselor, National Children’s Hospital, Clinical Assistant Professor of Pediatrics, The Ohio State University, Columbus, OH The National Blood Clot Alliance extends its appreciation to members of the NBCA DVT/PE Awareness Survey Steering Committee

LF&A, Inc. Lisa Fullam, President, Scottsdale, AZ Dry Heat Productions, Inc. Scottsdale, AZ Communications and Production Services

The NBCA DVT/PE Awareness Survey Was Made Possible by a Grant From The NBCA DVT/PE Awareness Survey Was Made Possible by a Grant From

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