for Hemophilia Why do you need to go to a hemophilia treatment Who are the members of the comprehensive care team?

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1 This chapter provides answers to these questions: What is comprehensive care? Why is comprehensive care important? Why do you need to go to a hemophilia treatment centre at least once a year? Who are the members of the comprehensive care team? What do the members of the comprehensive care team do? Where are hemophilia treatment centres located? How can we get comprehensive care if we live outside a big city? What makes comprehensive care a success? nn Marie Stain, R.N., B.. Nurse Coordinator, Comprehensive Care Clinic, The Hospital Sick Children, Toronto, ON

2 NOTES

3 Check-in waiting room meeting members of the team team members consult with Seng-Kang and his mother What is comprehensive care? can affect many parts of your son s body and have an impact on many aspects of family life. Because of this, medical teams take a comprehensive approach to caring hemophilia. In Canada this began in the 1970s. The word comprehensive means complete. Comprehensive care provides you and your son with most, or all, of the health care services your child to live a healthy and happy life. The comprehensive care team is a group of health professionals who will work with your child and family to help you understand and treat hemophilia. This team and your family will work together to set up a plan of care your child. Each member of the team is an expert in a different area. You are the expert on your son. You know more about him than anyone else. The comprehensive care team also includes a doctor, a nurse, a physiotherapist and a social worker. The team usually works together in a hemophilia treatment centre (HTC). In most big Canadian cities, hemophilia treatment centres are part of large hospitals. Sometimes, members of the comprehensive care team travel to smaller cities or towns to teach local doctors or emergency room (ER) staff about hemophilia. Their goal is to make sure that your son gets the best possible care. Nurse coordinator taking notes blood pressure weight height We would like to express our appreciation to the comprehensive care team at Ste-Justine Hospital, Montreal: Dr. Georges Rivard, Claudine messe, Nick Zourikian, Sylvie Lacroix, and to Seng-Kang Lin and his mother who allowed us to document his visit to the hemophilia treatment centre. Photos of his visit are used to illustrate this chapter and others throughout the. 3-1

4 Why is comprehensive care important? Comprehensive care means treating the whole person. It embraces all parts of your son s health his body, his feelings and where he fits in at school, at home and with friends. The goal of comprehensive care is to allow your child to live well. The comprehensive care team will support you and your family as your son grows. Everyone can feel secure knowing there is a team just him! Team members will teach you, your son and your family how to recognize and treat bleeding episodes. If your son has severe hemophilia, you may need to learn how to give him clotting factor concentrate at home. (See Chapter 6, Home Infusion.) If your son has moderate or mild hemophilia, you may not need to give him treatments at home. Your son s comprehensive care team works with your family, your family doctor and/or pediatrician, your local dentist and teachers at your son s school or day care. You should get to know the key people in your son s comprehensive care team. Do not be afraid to ask their advice if you have a question. If you are not sure who to talk to about a problem, speak to the nurse coordinator. She/he will tell you what you need to know or arrange you to speak to someone who can help you. Sudbury Comprehensive Care Clinic Hamilton Comprehensive Care Clinic Check-up with Dr. Rivard 3-2

5 Why do you need to go to a hemophilia treatment centre at least once a year? It is very important that you register your son at a hemophilia treatment centre, even if he gets most of his routine care close to where you live. Going to a hemophilia treatment centre at least once a year will allow you to: lways have one really good question your doctor. That's how you learn. get correct inmation about hemophilia from the comprehensive care team get blood tests that can only be done at a specialized lab have access to the newest treatments hemophilia find out about the latest research on hemophilia. Most children with hemophilia have a check-up at a hemophilia treatment centre every 6 to 12 months. How often you go depends on how serious your son s hemophilia is, and how often the team wants to see him an assessment. Having check-ups at the hemophilia treatment centre is very important to your son s care. s your son grows, his plan of care will change to meet his needs. When he visits the hemophilia treatment centre, the comprehensive care team will review his diary or treatment records. The team will want to know how many bleeds he has had and how much clotting factor concentrate he has infused since his last visit. Knowing this will help the team decide if he is getting the right amount of factor. It is also a good way of letting the team know if your son is having more bleeds in one joint than in others. This is called target bleeding, or bleeding into a target joint. The team can then talk to you about changing the dosage or the frequency of your son s treatments. s your son grows, what he does and how he gets treatments will evolve. Your visits to the hemophilia treatment centre will allow you and the team to respond to your son s changing needs. 3-3

6 Who are the members of the comprehensive care team? Below is a list of the members of the comprehensive care team. The team usually includes: a doctor (medical director) a nurse coordinator a physiotherapist a social worker a parent/caregiver. nurse coordinator physiotherapist social worker parent/ caregiver The team also works closely with: a coagulation laboratory (a lab that does specialized blood clotting tests) a hematology laboratory ( all other blood tests) a blood bank an x-ray department a dentist. Sometimes, the team may also include: other hematologists a pediatrician an orthopedic surgeon a rheumatologist an ear/nose/ throat specialist a geneticist a psychologist a hepatologist a gynecologist. doctor (medical director) It is essential to stay connected to your comprehensive care team, your family who will support and advise you, and to other parents of children with hemophilia. 3-4

7 I have been so impressed and encouraged by the knowledge, skills and research interests of our clinic doctor. I know he cares all the boys very deeply. He doesn t want to see the kids have breakthrough bleeds. She always made me feel that my questions mattered. Our nurse has become our friend. She has guided us through some tough times. My son trusts her and has his own relationship with her. What do the members of the comprehensive care team do? Medical Director The medical director is a doctor who is an expert on blood clotting or blood diseases. The medical director s job is to: oversee the comprehensive care team suggest treatments to control and prevent bleeding oversee your child s health. The medical director orders blood tests when your son visits the hemophilia treatment centre his regular check-up and reviews the results of these tests. The medical director helps you with any concerns about your child s health and answers your questions about hemophilia. You should be aware that the medical director does not take the place of your family doctor or your son s pediatrician (a doctor who works only with children). Your family doctor or pediatrician can give you advice about other child health issues, such as the flu, chicken pox or ear infections. Nurse Coordinator The Nurse Coordinator will be your key contact in the Comprehensive Care Team. She/he will coordinate how and when you and your child see other members of the team. In most clinics, the Nurse Coordinator will be the one who answers your telephone calls. If your son needs to go to the clinic to treat a bleed, the Nurse Coordinator is most often the person who will make sure the infusion goes smoothly. 3-5

8 n important part of the Nurse Coordinator s job is teaching people about hemophilia. She/he may go to your son s school or day care centre to talk to teachers or staff. The Nurse Coordinator can give useful inmation about hemophilia to your son s school, to local nurses and to babysitters. Feel free to ask copies of these booklets and videos. When your son is old enough, the Nurse Coordinator will help train you and your son to do home infusion, if this is needed. When your son is older, she/he will teach him how to self-infuse. (See Chapter 6, Home Infusion.) Get to know your Nurse Coordinator. She/he is there to help you. Do not be afraid to ask questions, even if they seem simple or silly. You can be sure that parents of other children with hemophilia ask similar questions. If you have a problem of any kind, it is important to solve it right away. Phoning your nurse coordinator does not always mean that you will have to take your child to the hospital. Often you will be able to solve the problem over the phone. I wasn t sure what to do. There were too many decisions to make. The support of our nurse at the clinic helped us calm down and deal with our son s health. Our family doctor just didn t know enough about it. We needed the clinic team. The Nurse Coordinator treats many children with hemophilia. This means she/he knows a lot about the disease and is experienced in treating it. 3-6

9 The physiotherapist teaching exercises assessing joints testing muscle strength Reincement at the clinic from the physiotherapist has helped us reince the importance of rest and icing at home. He knows his stuff and can talk to the kids about the types of bleeds he has seen and what is needed to heal a bleed. Physiotherapist The physiotherapist is trained to keep your son s muscles and joints healthy. The physiotherapist can give you advice on how to prevent or limit bleeding. She/he helps you to: understand what a bleed is know whether a bleed is serious or not learn what to do to help your son get better after each muscle or joint bleed. The physiotherapist can give you advice on how your son can be active. lthough a boy with hemophilia should not play contact sports, there are other physical activities in which he can participate. Exercise keeps his muscles strong. Strong muscles protect the joints and may help your son have fewer bleeds. Social Worker Most families of children with hemophilia meet the social worker when they first learn that their child has hemophilia. The social worker s job is to help parents, siblings and the child himself deal with the impact that hemophilia can have on their lives. One of the early issues that you may have to face is knowing how much to protect your child. s children get older, other issues may come up, such as how to train a babysitter, or whether or not both parents should work outside the home. By discussing your concerns with the social worker, you can find solutions that work you. 3-7

10 Coagulation Laboratory Many of the blood tests that your son needs are done by the coagulation laboratory. This kind of lab does specialized blood tests inhibitors, factor VIII and factor IX levels (also called factor assays), and any other blood tests that have to do with blood clotting. Hematology Laboratory Hematology means the study of blood. This lab will do all the other blood tests that your doctor may order. Blood Bank ll hospitals have a blood bank. In some HTCs, nurse coordinators order clotting factor concentrates from the hospital blood bank. In other centres, the Nurse Coordinator orders them from the local branch of the Canadian Blood Services or Héma-Quebec. In some parts of Canada, parents pick up the clotting factor concentrate from the Blood Bank in the hospital where their hemophilia treatment centre is located. In other regions, clotting factor concentrate is sent to the local hospital nearest the parents home. No matter who orders your son s clotting factor concentrate or where you pick it up, you need to keep up-to-date records of the concentrate your son uses, and to return these records to your nurse coordinator as requested. X-ray Department This department takes pictures (x-rays, ultrasound, MRI s, CT scans) of your son s joints and bones when your doctor orders them. These tests and pictures help the orthopedic surgeon, hematologist and physiotherapist decide what kind of treatment is best. They also help to show if the treatments already begun are working well. 3-8 s you learn more you feel more empowered. We joined the Society and met other families at social events. We needed them so much, to learn how to manage different bleeds. Our nurse gave us so much perspective. She explained what muscle or joint was having the problem, how common it was, how long it would take to resolve and how we could help our son at home.

11 Dentist ll hemophilia treatment centres promote good dental health. If your son doesn t take good care of his teeth, he may lose a tooth to decay (or cavities). He may also need dental surgery to fix a problem that has been allowed to worsen. It is very important to prevent dental problems. We need the support and guidance of doctors we didn t expect to need. Our son has severe arthritis in his ankle due to repeat bleeds. He is under the care of several specialists at the clinic and he is doing great, now that he takes an arthritis medication. I feel good that he is being monitored. lthough most hemophilia treatment centres offer a dental service to children with hemophilia, many families go to a local dentist. This is common when a family lives far away from the centre. No matter where you live, you and your family dentist can get in touch with the dental service at the hemophilia treatment centre with your questions or problems. It is also a good idea to talk about your son s dental care with the nurse coordinator or medical director. Other Hematologists In many centres, the medical director of the team is a hematologist. hematologist is a doctor who understands and treats blood problems. If the medical director is not a hematologist, he or she may call on a hematologist advice. Orthopedic Surgeon The orthopedic surgeon is a doctor who treats bones and joints. If your son needs to have an operation on a joint, this doctor will do it. Rheumatologist This rheumatologist treats health problems and diseases that cause pain and swelling in and around muscles and joints. 3-9

12 Ear/Nose/Throat Specialist (also called ENT) The ENT doctor treats all problems involving the ears, nose and throat. If your son needs tubes in his ears or has to have his tonsils or adenoids removed, this doctor will perm the operation. Geneticist The geneticist studies genes and how people inherit diseases. (See Chapter 2, How a Child Gets.) Psychologist The psychologist studies how a person s mind works. She/he can be helpful if a child is having trouble dealing with his hemophilia or if he is having learning difficulties at school. Hepatologist The hepatologist is a doctor who treats liver problems. Pediatrician This is a doctor who takes care of children, from birth to age 18. She/he has a lot of experience with diseases and health problems that affect children. Gynecologist This is a doctor who understands and treats women s diseases and disorders. gynecologist can work with women who are hemophilia carriers. Carriers may have heavy menstrual bleeding, and a gynecologist can find ways to reduce the bleeding. (For more details on hemophilia carriers, see Chapter 2, How a Child Gets.) My son feels angry about receiving medical care; he doesn t want to deal with hemophilia, doesn t want to see hemophilia doctors; he s in denial. He got counseling with the family and by talking about the disease, he was reassured that he is normal. 3-10

13 Where are hemophilia treatment centres located? Most hemophilia treatment centres are in large hospitals in big cities. Some cities have separate clinics children Dr. and Judith adults, Pool while in other cities both adults and children are treated in the same clinic. (To find a hemophilia treatment centre close to where you live, see Chapter 13, For More Inmation.) If hemophilia is diagnosed or even suspected, your family doctor or a specialist will refer your son to a hemophilia treatment centre close to where you live. If you happen to live in or near a city that has a HTC, then this is where your son will receive his ongoing care and assessments. How can we get comprehensive care if we live outside a big city? If your family lives in a small town, in a rural area or in a remote part of Canada, there are 3 ways to get comprehensive care: Regular check-ups: It is very important you and your son to visit a hemophilia treatment centre once or twice a year a full check-up. During these visits, your son will see a doctor, the Nurse Coordinator, a physiotherapist and a social worker (in some cases), and will have blood tests. The team will work with you to develop a plan your son s day-to-day care. Day-to-day care: Your local health care workers can help you with day-to-day concerns related to hemophilia. The comprehensive care team will gladly work with your local doctor and hospital staff to help them understand hemophilia and provide the correct treatment your son. You may want to leave a care plan provided by your comprehensive care team at 3-11

14 your local ER. In many cases, treatments such as the infusion of clotting factor concentrate or desmopressin will be given in the ER of your local hospital. The team s Nurse Coordinator can contact the ER staff to make sure they know the correct treatment and dose your son s bleeding episodes. Your team may be able to set up physiotherapy treatment close to home so you won t have to make as many long trips to the city. Special travelling clinics: Your son may also be able to attend a travelling clinic. These clinics are usually staffed by a doctor, Nurse Coordinator and physiotherapist from a hemophilia treatment centre. Travelling clinics are often set up in a central place in regions where there are several hemophiliacs. The goal is to reduce the travel time children and their parents. If the comprehensive care team holds these travelling clinics in a local hospital, they can also teach the ER staff and local doctors how to treat hemophilia. Our clinics gave the guys a chance to get to know other kids with hemophilia and gave the parents an inmal way to share ideas, concerns and inmation. London Comprehensive Care Clinic 3-12

15 What makes comprehensive care a success? Success depends on many things and many people. It is very important that you, your son and the comprehensive care team have strong, open lines of communication. Parents should feel comtable enough with the comprehensive care team to be able to pick up the phone and call with a question or concern. s your son gets older, he should feel comtable calling the nurse coordinator or physiotherapist when he has a question. Growing together as a team will increase the comt level everyone. Knowing that when you call the team, you don t have to start at the very beginning makes it easier to solve problems as they come up. We need CHS to be a strong advocate, working with centres regarding standards of care, that is, with medical staffing and programs. We need to work together to continue to advocate the safety of the blood system. There may be times when waiting a long time at the ER will make you upset with the system. Call your comprehensive care team to talk about what you went through and how you feel. By working together, you may be able to set up new ways to get treatment. s you and your child work with members of the comprehensive care team, you will gain a lot from their knowledge and experience. If you wish, your team can put you in touch with other families who also have a child with hemophilia. can help each other by sharing what they have learned. Success also depends on respect and being responsible. To get the most from comprehensive care, a family must try to do what the team suggests. This means following the treatment plan, and possibly making changes in life style or the sports your son plays. It s very important to keep good records of bleeds and the clotting factor concentrates and other treatments your son receives. These records show whether or not your son s treatment plan is working. The team is large but works together. The same goal is shared by all. The result is a healthy, active boy. This is the best way to measure success! 3-13