Comprehensive hemophilia care is: all of the medical services needed by a hemophiliac and his family for the treatment of hemophilia and related conditions. This care is provided at a comprehensive care clinic.This is a place where a person with hemophilia or a bleeding disorder can receive all the care he / she needs at one time. It is called a comprehensive care clinic because it offers a complete range of services.
The following people work there:
The medical director is often a hematologist who specializes in the area of blood clotting. He / she:
- prescribes the lab tests to find out the exact bleeding problem
- prescribes the proper treatment to control and prevent bleeding
- monitors the overall health of the hemophiliac.
The nurse coordinator is the front-line person in the clinic. He/she:
- helps families deal with the day-to-day problems related to hemophilia
- answers families’ questions over the phone or at the clinic
- provides out-patient care at the clinic
- teaches families how to do home therapy. (See ‘What is home care?’)
- organizes the delivery of blood products for home use
- coordinates appointments with other members of the comprehensive care team.
- checks the hemophiliac’s joints and muscles to make sure joint movement is not lost and that muscles remain strong
- helps the hemophiliac with exercises to regain lost joint function or to rebuild muscles
- helps the hemophiliac to find a sports and exercise program to keep him in top shape.
The social worker’s role is to help parents, siblings, people with hemophilia and other family members, including carriers, deal with the impact that hemophilia can have on their lives.
- provides dental care
- works closely with the hematologist to prevent bleeding during dental work.
The comprehensive care team will add other individuals as needed:
- an obstetrician / gynecologist (to help women with bleeding problems)
- a genetic counsellor (to give information to carriers)
- an orthopedic specialist (for joint problems and joint surgery)
- an HIV specialist (for treatment related to HIV infection)
- a hepatologist or gastroenterologist (for treatment related to hepatitis C infection).
Home care is the infusion of factor concentrates at home. In Canada most severe hemophiliacs are treated at home. This has major advantages over treatment at the hemophilia clinic or at the emergency room. These are:
- quicker treatment when a bleed starts
- a more normal life for the hemophiliac and other members of the family
- a greater acceptance of treatment by the young child
- the ability for people to take care of their own health.
The comprehensive care clinic team trains the family with a young hemophiliac how to recognize bleeds and then how to infuse the factor concentrate. Children often learn how to infuse themselves at the age of eight or ten. Then, the hemophiliac is able to treat himself at home, at school, at camp or on vacation.
Hemophiliacs on home care go to the comprehensive care clinic once or twice a year for a complete check-up.