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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.
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National Blood Clot Alliance Patient Governing Board Board Volunteer based, patient led Volunteer based, patient ledSciencedrivenSciencedriven Medical & Scientific Advisory Board Medical & Scientific Advisory Board www.stoptheclot.org Dedicated to the prevention & quality treatment of blood clots and clotting disorders
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Awareness Advocacy Stopthe Clot ® National Blood Clot Alliance www.stoptheclot.org
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A Call To Action Spotlights public health urgency of DVT/PE Sets forth recommendations for diagnosis, prevention, treatment Suggests criteria for research, education, policy www.stoptheclot.org
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Public Health Perspectives: Morbidity, Mortality Surgeon General’s General’s Call to Action 350,000-600,000 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
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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
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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
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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
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Methodology AwarenessAwareness General Public 500 Cancer Dx within 12 mos 67% Dx or Tx within 6 mos Mean age 57.84 64 female ProphylaxisProphylaxis InformationInformation AdherenceAdherence Inpatients 206 Outpatients 294 Oncology 500
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Survey Participants: Cancer Diagnoses Included n=500 cancer patients
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DVT/PE Awareness 24% 36% 24% 15% p=<.05%p<.05%
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DVT/PE Awareness
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Health Literacy: “Blood Clot” Awareness
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Risk Factor Awareness Among Oncology Patients
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Signs and Symptoms Awareness
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Provision of Information by MDs, Other HCPs p=<.05% 44% 27%
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Patient-Reported VTE Prophylaxis Experiences 35% p=<.05% p=<.10% p=<.05% 28% 21% 16% 52% 31% 38% 39% 52% 31%
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Key Findings: Inpatient Versus Outpatient Disparity Inpatient Outpatient Awareness Information Prophylaxis Joint Commission CMS
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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
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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
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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
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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 www.stoptheclot.org
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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 www.stoptheclot.org
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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 ® www.stoptheclot.org
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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 www.stoptheclot.org The National Blood Clot Alliance extends its appreciation to members of the NBCA DVT/PE Awareness Survey Steering Committee
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www.stoptheclot.org LF&A, Inc. Lisa Fullam, President, Scottsdale, AZ Dry Heat Productions, Inc. Scottsdale, AZ Communications and Production Services
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www.stoptheclot.org 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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For More Information, Contact the National Blood Clot Alliance On the Web: www.stoptheclot.org On Facebook: www.facebook.com/stoptheclot By phone: 877.4N O. C LOT 877.466.2568 © NBCA 2011
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