Winter 2013

Published by the Indiana Hemophilia & Thrombosis Center

ClottingTimes

The

Assuring Your Care Now and in the Future Dr. Amy Shapiro

Special Pediatric Edition

Assuring Your Care ......................................page 1

Meet Our Pediatric Providers ................. page 2-3

Transitioning to Adult Care .........................page 4

18 Steps to 18 .............................................page 5

Continuity of Care ......................................page 6

Meet Our Adult Providers ..........................page 7

Patient Portal ........................................ Back Page

Save the Date ....................................... Back Page

In This Issue

Dear Patients and Families:

I came to Indiana in 1987 with the goal of establishing a comprehensive hemophilia treatment center whose mission was focused on providing excellent care for all Hoosiers impacted by bleeding disorders. This was a significant undertaking. Over the last 25 years we have accomplished the following:

1. Developed one of the country’s foremost centers of excellence for patients and families with bleeding disorders,

2. Established a statewide system of care to support you in your local community.

More work remains.

Expanding the IHTC pediatric hematology practice: My efforts are now focused on assuring that medical expertise is available for future generations. We have been for-tunate in recruiting excellent physicians to join our team over the past several years to help us achieve this goal. Many of you have already met these physicians through contact in clinic and the hospital, or spoken to them after normal clinic hours. These physicians are also involved in programs such as Camp Brave Eagle, Thompson Outpost Teen Leadership Camp and various educational events such as the National Hemophilia Foundation’s and Hemophilia of Indiana’s annual meetings. A biographi-cal summary of each of these physicians is included in this newsletter and is also available on our website at www.ihtc.org.

Increasing involvement in Clinic and Comprehensive Care: We have integrated all of the pediatric physicians into comprehensive clinic and the daily clinic schedule. When you come to comprehensive clinic or to clinic for an appointment, you will see one of these physicians. I understand that seeing a different physician may lead to some concern that they are not familiar with your history, or that you do not yet have an established relationship. Rest assured they are dedicated to and familiar with your care. Developing a relationship with all of our staff will make encounters more familiar and comfortable. If, based on contact you have already had with any of our pediatric hematology physicians, you would like to designate one of them as your primary IHTC Hematologist, please do so. Please know I continue to oversee all comprehensive clinic reports and pediatric care programs, and therefore remain a part of your individual care and issues on an ongoing basis.

My attention is focused on guaranteeing that the IHTC remains strong, vibrant, and able to meet your needs, even in the face of the changing healthcare environment. I have confidence in our pediatric physician team, and know that once you become increasingly familiar with these excellent physicians, you will as well.

It is an honor and privilege to be a part of the work we do and have accomplished. We are always available to discuss your needs and concerns. Please contact Jennifer Maahs, MSN, PNP, at 317-871-0000 with questions and concerns.

© Copyright Indiana Hemophilia & Thrombosis Center, Inc. 2013

For further information about bleeding disorders, visit www.ihtc.org and the following websites:

• National Hemophilia Foundation http://www.hemophilia.org• World Federation of Hemophilia http://www.wfh.org

Follow the IHTC on Facebook www.facebook.com/IndianaHemophilia

June 16-21 • Camp Brave Eagle

July 27-30 • Doug Thompson Teen Camp

August 24-25 • HoII Annual Meeting

September 14 • Hemophilia Walk

Mark Your Calendars

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Amy Shapiro, M.D., serves as the CEO and Co-Medical Director of the IHTC. Dr. Shapiro is a board-certified Pediatric Hematologist-Oncologist, and received her medical degree in 1980 from the New York University School of Medicine. She completed her pediatric internship and resi-dency and pediatric hematology/oncology fellowship at the University of Colorado Health Sciences Center. In 1987 she became an assistant professor of pediatrics at the Indiana University School of Medicine and the Medical Director of the Indiana Hemophilia Comprehensive Center. In 1993 she was promoted to associate professor with tenure. In July 1998 she founded the Indiana Hemophilia and Thrombosis Center (IHTC) as an independent program with Dr. Anne Greist. Dr. Shapiro is head of pediatric services at the IHTC. She is also an Adjunct Professor of Pediatrics at Michigan State University.

Dr. Shapiro has served on the Medical and Scientific Advisory Council (MASAC) of the National Hemophilia Foundation since April 1997, and is active in many local, regional, national, and international medical organizations. Dr. Shapiro was Chair of the American Thrombosis and Hemostasis Network (ATHN) Board of Directors in 2008, and continues to be active on the board. Dr. Shapiro is a member of the International Society on Thrombosis and Haemostasis since 1991. Dr. Shapiro cur-rently serves on several of the National Institutes of Health Boards. In 1997 she was honored with the “Tony and Mary Hulman Health Achievement Award” and in 1998 with the “W. George Pinnell Award” for Outstanding Service from Indiana University. She was named “Physician of the Year” in 2001 by the National Hemophilia Founda-tion and received the “Distinguished Hoosier Award” in 2009 from the State of Indiana, presented to her by Governor Mitch Daniels. She has also authored or co-authored over 120 articles and abstracts and eight textbook chapters.

Charles Nakar, M.D., serves as an IHTC Pediatric Hematologist. Dr. Nakar attended medical school at Ben-Gurion University in Israel. Dr. Nakar completed his Pediatric Residency at Ben-Gurion University and the North Shore-Long Island Jewish System/Schneider Children’s Hos-pital Program. Dr. Nakar completed his Pediatric Hematology/Oncology

Amy Shapiro, M.D.

Angeli Rampersad M.D., serves as an IHTC Pediatric Hematologist. Dr. Rampersad attended medical school at the University of the West Indies in Trinidad. Dr. Rampersad earned her Doctorate of Medicine and Surgery and served as house staff at the University of the West Indies, Department of Pediatrics. She completed her Pediatric Residency and served as Chief Resident at the State University of New York – Downstate Medical Center in Brooklyn. Dr. Rampersad completed her Pediatric He-matology/Oncology fellowship at Cornell University and Memorial Sloan Kettering Cancer Center. Dr. Rampersad has a special interest in bleeding disorders and hemoglobin disorders. She is the Director of the Indiana Sickle SAFE Newborn Screening Program. Dr. Rampersad has authored a manuscript focused on the use of radiosynovectomy as a treatment for hemophilic synovitis based on the experiences of two hemophilia treatment centers – the IHTC and La Paz University Hospital in Spain. Dr. Rampersad enjoys reading fiction, dining out, traveling and spending time with her family.

Frederico Xavier, M.D., serves as an IHTC Pediatric Hematologist. Dr. Xavier attended medical school at the State University of Campinas in Brazil. Dr. Xavier completed Pediatric Residencies at Long Island College Hospital in Brooklyn and at the Schneider’s North Shore-Long Island Jew-ish System/Schneider Children’s Hospital Program. Dr. Xavier completed a Pediatric Hematology/Oncology fellowship at St. Jude Children’s Re-search Hospital in Memphis, Tennessee and a Pediatric Thrombosis/Hae-mostasis fellowship at the Hospital for Sick Children in Toronto, Canada. Dr. Xavier has a special interest in pediatric thrombosis including clinical care and research. Dr. Xavier has worked to improve services to bleeding disorder and thrombosis patients, and is involved in research studies in both areas. Dr. Xavier is currently involved in a collaborative study with the University of Vermont investigating the relationship between the Factor V Leiden mutation and the risk of developing a thromboembolic event. Dr. Xavier has published several papers and book chapters, the most recent of which discusses rare inherited bleeding disorders. Dr. Xavier enjoys running, watching movies, dining out and spending time with his family.

Sweta Gupta, M.D., serves as an IHTC Pediatric Hematologist. Dr. Gupta attended medical school at Maharaja Sayaji Rao University in India. Dr. Gupta completed her Pediatric Residency at OSF St. Francis Medical Center in Peoria, Illinois, and her Pediatric Hematology/Oncol-ogy Fellowship at the Medical College of Wisconsin in Milwaukee. Dr. Gupta has a special interest in Von Willebrand disease (VWD) including diagnosis, management and impact on quality of life. Dr. Gupta has co-authored several papers in journals including Haemophilia and Pediat-ric Hematology/Oncology. Dr. Gupta works within the IHTC to improve service delivery to bleeding disorder patients, including improved pre-natal counseling and care to newborns and infants. Dr. Gupta is an investigator for a study to validate the composite score to identify VWD in children. Dr. Gupta enjoys painting, cooking and spending time with her family.

fellowship at Cornell University and Memorial Sloan Kettering Cancer Center in New York. Dr. Nakar has a special interest in hemophilia, specifically surgical interventions, management and outcomes, inhibitor development and eradication, and intracranial hemorrhage (ICH). Dr. Na-kar also has expertise in platelet pathophysiology, genetic disorders, and ITP. In 2010 Dr. Nakar published a paper in Haemophilia analyzing the safety and efficacy of recombinant activated factor VII in the treatment of ICH in hemophilia patients with inhibitors. Dr. Nakar works within the IHTC to improve service delivery to bleeding disorder patients, includ-ing improved pre-natal counseling and care to newborns and infants. Dr. Nakar is overseeing the development of a unified problem list for all IHTC patients to further improve continuity of care. He is also overseeing analysis of the IHTC surgical database to ensure optimal hemostasis for patients with bleeding disorders at the time of a procedure. Dr. Nakar enjoys photography and stamp collecting.

Sweta Gupta, M.D. Charles Nakar, M.D. Angeli Rampersad, M.D. Frederico Xavier, M.D.

Meet Our Pediatric Physicians & Nurses

The IHTC’s phone triage nurses have expertise in the management of bleeding disorders in both children and adults. Each triage nurse acts as a liaison between the patient and physician, quickly determining the type of care a patient needs in a given situation. Nurses respond to requests for prescriptions, follow-up on laboratory results, provide medical guidance to patients regarding injuries and bleeding episodes, assist in procedure planning, and refer patients for further evaluation as needed. See our nursing team below and their years of dedicated service.

Pediatric Phone Triage Nurses

Clinic Nurses

Lisa Bowman, RN5 years

Molly Simmons, RN, BSN 10 years

Jeanne Sagar, RN, BSN 15 years

Brooke Towns, RN, BSN 2 years

Jen Maahs, MSN, PNP 21 years

Ivonne Fuentes, BSN, GN 5 years

Sue Dunbar, CRNA, RN 5 years

Beth Ansert, RN, BSN 11 years

Erin Smith, RN, BSN 2 years

Brittany Molter, RN, BSN 1 year

Kristy Van Rheenen, RN 2 years

The IHTC’s clinic nurses serve both pediatric and adult patients.

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1. General Health: I will visit my primary care physician on a regular basis for my general healthcare and I will notify all medical provid-ers involved in my care about my bleeding disorder.

2. General Health: I will develop a lifestyle plan that includes regular exercise and a healthy diet.

3. General Health: I will be able to list the medi-cations I take by mouth including the dose, schedule, and reason prescribed.

4. Contact Information: I will carry the telephone numbers for my hemophilia treatment center, primary care physician, pharmacy provider, and other important medical care providers.

5. Hemophilia Treatment Center (HTC): I will see my HTC provider as recommended, including attending comprehensive clinic, calling the center with changes in address, phone and insurance, and calling in advance if I am unable to keep a scheduled appointment.

6. Emergency Treatment: I will have a plan for emergencies that includes contacting my HTC regarding travel plans and knowing the location of the local emergency room and HTC closest to my travel destination.

7. Emergency Treatment: I will wear a medic alert bracelet/necklace so that emergency re-sponders will be aware of my bleeding disorder in the event that I am unable to tell them.

8. Bleeding Disorder: I will be aware of my diag-nosis, the name of my treatment product, and the dose needed to treat bleeding episodes.

9. Bleeding Disorder: I will know how my bleed-ing disorder is inherited. I will understand why it is recommended that “at risk” people contact the HTC for evaluation.

10. Treatment: I will take responsibility for calling my pharmacy provider for medication/clotting

factor concentrate refills to prevent running out.

11. Treatment: I will have a safe, secure location to store my clotting factor concentrate and sup-plies. I will dispose of all bio-hazardous waste such as needles as recommended by my HTC.

12. Treatment: I will understand and recognize the signs/symptoms of a bleeding episode and know how to calculate the clotting factor concentrate/Stimate dosage and the schedule needed to treat each bleeding episode.

13. Treatment: I will be able to self-infuse or know where to go for infusion if needed. I will keep track of all infusions in a treatment log.

14. Treatment: I understand that prompt treat-ment is very important for bleeding episodes and I will treat within 3 hours of recognition of a bleeding episode or injury. In addition to infu-sion, I will treat injuries and bleeding episodes with other therapies such as R.I.C.E.

15. Procedures: I will contact the HTC at least 2 weeks prior to a scheduled procedure, such as a surgery or a dental intervention, to ensure an appropriate plan is made to prevent bleeding.

16. Education: I will be aware of local and na-tional patient advocacy organizations (such as Hemophilia of Indiana, Inc., and The National Hemophilia Foundation) and how to access the information and services they provide.

17. Prevention: I will take precautions prior to engaging in activities that may cause a bleeding episode. These precautions could include the use of protective equipment like a bicycle hel-met, or infusion prior to participation in certain activities. If I am on a sports team, I will notify my coach of my bleeding disorder.

18. Insurance: I will contact the HTC social worker to discuss insurance options prior to selecting a new policy or losing coverage.

The IHTC’s Program for Transitioning to Adult Care:18 Steps to 18

Help Your Child Transition to Adult Healthcare

As your child approaches adolescence and adulthood, you need to consider some important issues that fall under the term “Transition”. We would like to provide you information about how transition is handled at the IHTC and how your child’s care is delivered through the adult service. After the age of 18, patients are expected to function as adults and we have designed a tool to help them achieve this.

In Indiana your child legally becomes an adult at age 18 years; at that time, they can apply for a credit card, vote, marry, and join the military. Although age 18 confirms legal adulthood, we know that adolescents often do not achieve full maturity or independence at that age. Emerging research into brain development suggests that many adolescents don’t acquire adult skills such as mature decision-making until age 25 years or older.

An important part of the transition process is the provision of assistance and support to prepare each individual to function as an adult, including the ability to manage their healthcare independently. If your child has special medical needs such as bleeding disorder or chronic medical condition, successful transition to adult healthcare providers is especially critical. A thoughtful process that begins early to plan to equip your child for functioning as an adult increases the likelihood of a successful transition.

To assist families in the transition process, the IHTC has developed a program called 18 Steps to 18. Children can begin participating in this program during comprehensive clinic at age 12 years. 18 Steps to 18 identifies the key tasks for adolescents to master prior to achieving independence. The program is designed for participation over several years, thereby providing sufficient time to master each goal. Mastering the 18 Steps ensures that your child is adequately prepared to take ownership of their healthcare.

Read through the 18 Steps to 18 on the next page. If you have questions about the 18 Steps to 18 program, or if you want to participate, call the IHTC at 877-256-8837, or speak to the IHTC nurse at your next clinic visit.

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The IHTC has strived to develop seamless communication between care providers. Communication between providers oc-curs in a variety of circumstances to assure continuity of care. For example, you may discuss an issue with an on-call care provider who is not your primary IHTC physician. Your issue is communicated to your regular physician by the on-call staff. When you call the IHTC and speak to a nurse, physical therapist, social worker etc., your issues are also communicated to your primary care providers.

In addition, another important aspect to assure best care occurs when children transition to the adult service. Your transi-tion to the adult service at the IHTC has been designed to assure best ongoing care. The IHTC multidisciplinary staff serves both pediatric and adult consumers; this has been purposely designed to provide expertise across all ages and continu-ity of your care. When pediatric patients transition to the adult service, it is your primary IHTC physician that changes; in addition, IHTC telephone triage nursing staff is divided into pediatric and adult providers. When an individual transitions between the pediatric and adult service, adult medical staff is made aware of individual medical issues and history in ad-vance of their transition. Listed below are some common questions and answers related to care transition.

Do I need to request medical records to give to the adult hematologist at IHTC?

No, the adult hematologist already has access to your child’s medical record through the IHTC’s electronic medical record system. His or her electronic medical record includes all previous office visits, comprehensive clinic visits, hospitalizations, surgeries, medications, allergies and referrals. If your child has a complicated medical history, this will be included in the record.

Can my child and I meet the adult hematologist prior to transitioning care?

Absolutely! You are encouraged to request a meeting at any time. We recommend that you arrange this visit during a time when your child is not experiencing an acute issue to ensure adequate time for questions and to prevent unnecessary stress.

How does my involvement change as a parent once my child has transitioned to adult care?

You will likely accompany your child to their first adult visit. Before the physician meets with your child alone, he or she will meet with you and your child together. One-on-one time between your child and the physician is an important step in your child’s journey to becoming independent and taking ownership of their healthcare. We strongly recommend that prior to this visit, your child becomes familiar with their healthy history and completes the 18 Steps to 18.

What if the adult hematologist has a question about my child’s medical history?

In addition to ongoing communication, the IHTC’s pediatric and adult physicians regularly meet and discuss patient care. The IHTC’s pediatric team maintains daily communication with adult providers and is available at all times should an adult provider need to discuss an individual’s care.

What part of the IHTC multidisciplinary team remains consistent despite whether they are served by a pedi-atric or adult physician?

The following multidisciplinary providers remain the same whether you are a child or an adult: risk management nurse, physical therapist, dental hygienist, dietitian, genetic counselor, social worker, career counselor, and research coordinator.

Continuity of Care: How is the IHTC preserving my child’s continuity of care from pediatric to adult providers?

Ashwin Vasudevamurthy, M.D., serves as the IHTC Hospitalist. Dr. Vasudevamurthy attended Indiana University and earned his medical degree from Ross University School of Medicine in the West Indies, fol-lowed by clinical rotations in Miami, Baltimore, New York and Chicago. Dr. Vasudevamurthy completed his Internal Medicine Residency at St. Vincent Hospital in Indianapolis where he also served as Chief resi-dent. Dr. Vasudevamurthy has a special interest in bleeding disorders, medical management of complications of aging in individuals with bleeding disorders, treatment of platelet disorders, and malignant hematology. Dr. Vasudevamurthy has presented several research post-ers, most recently at the International Blood-Brain Barrier Conference. Dr. Vasudevamurthy is playing a lead role in the IHTC cardiovascular disease prevention program in bleeding disorders and is developing a module on this topic for the Partners in Bleeding Disorders Education Program. Dr. Vasudevamurthy enjoys playing basketball with friends and spending time with his family.

Anne Greist, M.D., serves as Co-Medical Director of the IHTC. Dr. Greist graduated from King’s College Medical School in London, and completed her hematology-oncology training at the Indiana University Medical Center. In 1998 she co-founded the Indiana Hemophilia and Thrombosis Center with Dr. Amy Shapiro, as director of the IHTC adult clinical service. Dr. Greist is also a part-time clinical associate professor in the hematology-oncology division at Indiana University. In 2010 the IHTC entered into a collaboration with Dr. Chite Asirwa, a US trained Kenyan hematologist-oncologist who is developing a hemophilia/non-malignant hematology program in Eldoret, Kenya. Dr. Greist serves as the IHTC lead physician for our team traveling to Kenya in the spring and fall to provide education, training, and program development. Dr. Greist’s major interests include disorders of hemostasis, thrombosis, and sickle cell disease.

Chirag Amin, M.D., serves as an Adult Hematologist at the IHTC. Dr. Amin attended medical school at the Indiana University School of Medicine. He completed his Internal Medicine Residency at the University of New Mexico and Hematology/Oncology Fellowship at the University of North Carolina at Chapel Hill. Dr. Amin has a special interest in bleeding disorders, thrombosis and malignant hematology and oncology. Dr. Amin participates in the IHTC’s bleeding disorders outreach clinics throughout the state. He is also a regular lecturer for St. Vincent Hospital medical staff. Dr. Amin has co-authored a variety of papers and abstracts and is an investigator for twenty research studies for persons with bleeding disorders or hemoglobinopathies, the most recent of which evaluates long-lasting recombinant factor VIII. Dr. Amin enjoys traveling, cooking, reading and spending time with his family.

Jay Gaddy, M.D., Ph.D., serves as an IHTC Adult Hematologist. Dr. Gaddy attended medical school at the Indiana University School of Medicine, and completed his Internal Medicine Residency and Adult Hematology Fellowship at Indiana University. In addition, Dr. Gaddy earned a doctorate in Immunology from Indiana University. Dr. Gaddy has a special interest in benign and malignant hematology. He is a recognized excellent teacher and participates regularly in education of medical staff at St. Vincent Hospital. Dr. Gaddy has specific expertise in the evaluation and care of individuals with complex medical condi-tions who develop hematologic disorders. Dr. Gaddy has published several papers and book chapters in the fields of hematology and immunology. He represents the IHTC by serving on and co-chairing several committees at St. Vincent Hospital, specifically the Transfu-sion and Venous Thromboembolism Committees. Dr. Gaddy is also a frequent lecturer and supervises residents and fellows at St. Vincent Hospital. Dr. Gaddy enjoys fishing, off-road motorcycling and spending time with his family.

Anand Tandra, M.D., serves as an IHTC Adult Hematologist. Dr. Tandra attended medical school at Osmania Medical College in India. Dr.

Anne Greist, M.D. Chirag Amin, M.D. Jay Gaddy, M.D., Ph.D. Anand Tandra, M.D. Ashwin Vasudevamurthy, M.D.

Meet our Adult Physicians & Nurses

Adult Triage & Outpatient Management Nurses

Melissa Long, RN 4 years

Elaine Menshouse, RN 4 years

Carol Haney, LPNless than 1 year

Tandra completed his Internal Medicine Residency at Michigan State University and his Hematology/Oncology Fellowship at the University of Cincinnati. Dr. Tandra has a special interest in bleeding disorders, leukemia and lymphoma. Dr. Tandra has specific expertise in the evalu-ation and care of individuals with complex medical conditions who de-velop hematologic disorders. Dr. Tandra is an investigator for a variety of research studies for persons with bleeding and thrombotic disor-ders. Currently, he is developing hematology specific improvements to the IHTC’s electronic medical records system, including disease specific templates which will further enhance patient care. Dr. Tandra has co-authored a book chapter about the treatment of inhibitors in hemophilia B with Dr. Shapiro. Dr. Tandra enjoys reading, cooking, and listening to music.

8402 Harcourt Road, Suite 500Indianapolis, IN 46260

You can now connect to the IHTC online via the IHTC Patient Portal! The IHTC developed this secure website that al-lows you to access your electronic health record. The Portal brings your health record to the leading edge of tech-nology, making it accessible and secure. Using the Portal, you may access a summary of your chart information and request prescription refills or clinic appointments electronically. To enroll, complete a sign-up form at your next ap-pointment. Your username and password will then be emailed to you and your pin number will arrive through USPS mail within one week. This process ensures the privacy and security of your health information.

The IHTC Patient Portal - Are you connected?

IHTC ZoobileeMark your calendar for

an educational event tailored to meet your needsJune 8, 2013 at the Indianapolis Zoo

You will receive more information via mail soon!