Comprehensive care

Comprehensive care is: all of the medical services needed by a person with VWD and his/her family for the treatment of VWD and related conditions. This care is provided at a Hemophilia/Bleeding Disorder Treatment Centre.

This is a place where a person with VWD can receive all the care he/she needs at one time. It is called comprehensive care because it offers a complete range of services. The following people work there:

The Medical Director. He/she is often a hematologist who specializes in the area of blood clotting. He/she:
o prescribes the lab tests to find out the exact bleeding problem
o prescribes the proper treatment to control and prevent  bleeding
o monitors the overall health of the person with VWD.

The Nurse Coordinator. He/she is the front-line person in the clinic. He/she:

o helps families deal with the day-to-day problems related to VWD
o answers families’ questions over the phone or at the clinic
o provides out-patient care at the clinic
o teaches families how to do home therapy (See What is home care?)
o organizes the delivery of blood products for home use
o coordinates appointments with other members of the comprehensive care team.
 

The Obstetrician/Gynecologist. He/she:

o works with the hematologist to prevent and control menorrhagia
o helps the woman with VWD to avoid complications during pregnancy and childbirth.

The Dentist. He/she:

o provides dental care
o works closely with the hematologist to prevent bleeding during dental work.

The Physiotherapist (especially for people with Type 3 VWD). He/she:

o checks the person’s joints and muscles to make sure joint movement is not lost and that muscles remain strong
o helps the person to regain lost joint function or to rebuild muscles through exercise
o helps the person to find a sports and exercise program to keep in top shape.


The comprehensive care team will add other individuals as needed. These include, among others:

• a social worker (to help families deal with the stresses of a bleeding disorder)
• a genetic counselor (to give information to carriers)
• an orthopedic specialist (for joint problems and joint surgery, especially for people with Type 3 VWD).

Home care is the infusion of factor concentrates or desmopressin at home. This is most helpful for people who need treatment often. A decision to go on home care will be made in consultation with the comprehensive care program team. Questions that need to be asked are:

• Is treatment needed often enough to justify home care?
• Is the person with VWD or his/her caregiver willing to take on the responsibility?
• Is the person with VWD or his/her caregiver able to learn to do the intravenous infusions?

Home care has major advantages over treatment at the comprehensive care clinic or at the emergency room. These are:

• quicker treatment when a bleed starts
• a more normal life for the person with VWD and other members of the family
• a greater acceptance of treatment by the young child
• the ability for the person to take care of his/her own health.

Families of children with Type 3 VWD will need to be trained by the comprehensive care program team in how to recognize joint bleeds and then how to infuse the FVIII/VWF concentrate or desmopressin. Children often learn how to infuse themselves at the age of eight or ten. Then, the person with VWD is able to treat himself/herself at home, at school, at camp or on vacation.

Desmopressin, either as an injection or as a nasal spray, can also be administered at home. However, it has a limited shelf life. People using it at home should carefully check expiry dates.

Cyklokapron and Amicar are drugs that can also be taken at home on a doctor's prescription.

People on home care go to the comprehensive care program once or twice a year for a complete check-up.