1. Venous Thromboembolism (VTE) A patient safety issue from a patient perspective Beth Waldron, MA Program Director, Clot Connect University of North Carolina at Chapel Hill April 16, 2012 NCD HENS Partnership for Patients Webinar

2. Disclosures Beth Waldron None Clot Connect Program Cooperative Agreement with CDC Educational charitable donations by Talecris Biotherapeutics NC Cancer Hospital Endowment Fund

3. Agenda 1.VTE background 2.Patient story 3.VTE prevention in hospital setting 4.VTE resources 5.Discussion

4. Terminology Deep Vein Thrombosis (DVT):  Clot that has formed in the deep veins of the body, also called Deep Vein Thrombosis, or DVT  While DVT can occur anywhere in the body, it is most common in the leg. Pulmonary Embolism (PE):  Clot in the pulmonary vessels, often referred to as PE.  PE occurs when a blood clot breaks off from a DVT, travels through the blood stream and lodges in the lung.  Potentially life-threatening complication of DVT. Venous Thromboembolism (VTE):  DVT + PE are collectively known as VTE Deep Vein Thrombosis (DVT):  Clot that has formed in the deep veins of the body, also called Deep Vein Thrombosis, or DVT  While DVT can occur anywhere in the body, it is most common in the leg. Pulmonary Embolism (PE):  Clot in the pulmonary vessels, often referred to as PE.  PE occurs when a blood clot breaks off from a DVT, travels through the blood stream and lodges in the lung.  Potentially life-threatening complication of DVT. Venous Thromboembolism (VTE):  DVT + PE are collectively known as VTE

5. Who is at increased risk for VTE? A.70 year old man in good general health B.40 year old athletic man having knee surgery C. 30 year old cancer patient on chemotherapy D.20 year old healthy pregnant woman E.None of the above F.All of the above QUESTION:

6. Factors which increase VTE risk  Immobility (during hospitalization, recovery at home)  Major surgery (abdomen, pelvis, hip, knee)  Bone fracture or cast  Central venous catheter  Increased estrogen (birth control pill/patch/ring, pregnancy, hormone therapy)  Certain medical conditions (cancer and its treatment, heart failure, inflammatory disorders)  History of VTE; family history of VTE  Clotting disorder (thrombophilia)  Obesity  Smoking  Age 95% of hospital patients = at risk 31% of hospital patients = moderate to high risk 95% of hospital patients = at risk 31% of hospital patients = moderate to high risk Anderson et al. 2007 AHRQ HCUP Discharge data * multiplicative risk

7.  Approximately 300,000-600,000 Americans develop VTE each year. 1  60,000-100,000 die each year from VTE.  Many deaths from PE go undiagnosed. Actual figure may be higher.  40% of all VTE are associated with hospitalization 2  occurring either in the hospital or shortly after discharge  VTE is one of the leading preventable causes of hospital death 3  40% or more of hospital associated VTE is preventable through prophylaxis 4 VTE: A patient safety issue Sources: 1 CDC 2 Heit 2012 3 AHRQ 4 PfP

8. VTE: Not a benign event for patients and family  Sudden death occurs in 25% of patients with pulmonary embolism 1  Post-thrombotic syndrome (PTS)  Occurs in 40-50% of DVT survivors 2  Characterized by chronic swelling, pain, decreased mobility, ulceration  Chronic Thromboembolic Pulmonary Hypertension (CTEPH)  Occurs in 4% of PE survivors 3  Characterized by persistent shortness of breath, particularly with exercise, which can lead to right-side heart failure  High levels of anxiety, depression and psychological stress have been reported among VTE patients 4 Sources: 1 CDC 2 Ashrani/Heit 2009; Kahn et al 2008 3 Pengo et al. 2004 4 Lui et al 2011; Lukas et al 2009

9. VTE: Not a benign event for hospitals or society Estimates:  $10 billion in medical costs each year due to VTE (United States) 1  Total medical cost per DVT per patient per year = $19,800 (US 2010) 2  Among health plan members with a first time VTE hospitalization, 25% had hospital readmission with an average cost of $15,000 3  Appropriate prophylaxis can reduce hospital costs by as much as $2,000 per high risk patient 4 Sources: 1 CDC-NCBDDD Strategic Plan 2011 2 Mahan et al. 2011 3 Spyropoulos & Lin 2007 4 Amin et al 2011

10. A patient’s clotting story…my story  2003, 34 years old, married, 1 child:  Diagnosed with DVT and bilateral PE  Prior to clotting episode:  Excellent health  No notable medical conditions  No recent travel, surgery, or hospitalization  Medications: recently restarted oral contraceptives following 4 year break Mike, Beth & Evan Waldron

11. My story: Missed opportunities for diagnosis Symptoms: Initial diagnosis: Leg pain pulled muscle Chest pain+ respiratory infection - prescribed antibiotics Rapid heart rate+ Shortness of breath Result:Leading to: Second PE episode 9 day hospitalization surgical placement of inferior vena cava filter initiation of anticoagulant therapy IV heparin Subcutaneous low-molecular weight heparin warfarin (Coumadin®) Symptoms of VTE can mimic other less serious conditions, delaying accurate diagnosis

12. My story: Outcome My risk factors for clotting at the time of diagnosis:  Genetic thrombophilia identified (homozygous Factor V Leiden mutation)  Oral contraceptives ?  ???  multiplicative risk Today:  Long-term anticoagulant therapy  No new clots  Mild post-thrombotic syndrome  Lifelong worry of recurrence  Motivated to prevent and reduce burden of VTE!!

13. Story Takeaway: From the patient perspective, VTE is a major event For VTE survivors:  Risks associated with anticoagulant use, bleeding risk  Burden of anticoagulation, management/monitoring  Pain management  Mobility concerns  Development of post-thrombotic disorders, possible disability  Higher risk for clot recurrence  Psychological effects associated with a life-threatening and lifestyle-altering medical condition  Cost of care: both short-term acute management and long-term follow-up care Prevention, prevention, prevention!!! If you prevent the VTE, you prevent the negative outcomes.

14. VTE Prevention Much is known about how to prevent VTE, but that knowledge is not being applied in a consistent, systemic way.  Guidelines for Hospital Prevention of VTE: American College of Chest Physicians (ACCP) 9 th edition, 2012 American College of Physicians (ACP) November 2011 American Academy of Orthopedic Surgeons (AAOS), September 2011 American College of Obstetricians and Gynecologists (ACOG), September 2011 American Society of Clinical Oncology (ASCO) 2007 National Comprehensive Cancer Network (NCCN) 2010  VTE risk assessment prophylaxis Pharmacologic – anticoagulant Mechanical - compression device, graduated compression stockings  Weighing VTE risk with bleeding risk associated with anticoagulants

15. Challenges in reducing hospital associated VTE:  Limited use of prophylaxis  Prophylaxis may be given too late, for too short a duration, or in less than optimal dose or form  Inconsistent application of guidelines  Variance by facility, provider specialty, individual physician, surgical procedure, inpatient/outpatient, medical/surgical A need exists for: 1.Standardized VTE risk assessment 2.Adherence to standards 3.Consistent application of policies, VTE prevention measures 4.Health care professionals fully engaged in VTE prevention at their hospital.  Knowledge: understand the impact it has on patient safety and optimal health outcomes  Empowerment: provided the tools and resources to have impact

16. Clot Connect initiatives are targeted at:  Persons who have experienced VTE  Persons at high risk for developing VTE  Health care professionals Clot Connect initiatives are targeted at:  Persons who have experienced VTE  Persons at high risk for developing VTE  Health care professionals  Outreach initiative at the University of North Carolina in Chapel Hill  Mission: to increase knowledge of VTE, thrombophilia and anticoagulation by providing education and support resources for patients and health care professionals VTE Resource.org

17. www.ClotConnect.org

18.  Education materials, videos, webinars  Education blog answering common questions and concerns  Online support forum  Monthly newsletter For Patients… www.ClotConnect.org

19. For Health Care Professionals…  Access to clinical care guidelines  Patient handout materials  Education blog to assist with clinical care and anticoagulation management  Monthly newsletter www.ClotConnect.org

20. Summary VTE: A patient safety issue from a patient perspective  VTE is a major patient safety issue.  VTE can occur in anyone, at any age.  VTE is not a benign medical event---impact on patients and hospitals.  VTE can be prevented.  40% or more of VTE is preventable through prophylaxis. Key to reducing hospital-associated VTE:  Vigilance to consistently assess all hospitalized patients for VTE risk and implement proper prophylaxis measures. Key to reduce complications of VTE:  Patients should be aware of the symptoms of DVT and PE and know what to do/who to call should symptoms arise following discharge.

21. Contact information: Beth Waldron Program Director, Clot Connect University of North Carolina at Chapel Hill CB 7305 170 Manning Dr-3185K Physician Office Building Chapel Hill, NC 27599-7305 919-966-2809 bwaldron@med.unc.edu www.ClotConnect.org