GENETIC COUNCELING

CLINICAL PRACTICE GUIDELINES
Hemophilia and von Willebrand's disease: 2. Management
(Edition 2, Update 2 [1999-07-07])

Involvement of the family
These lifelong, life-threatening and costly diseases have a significant impact on many aspects of family life. Parents, spouses and other family members are active participants in the patient's care. The diagnosis can produce tremendous anxiety in parents about their children's future and their risks of everyday living. Adolescents who feel their need for independence is in conflict with the need to conform to a care regimen may suffer both anxiety and rebellion. Patients and their families are also anxious about the risks of viral transmission through the blood products they need. Some of this anxiety can be alleviated through proper education of the patient and family about the disease and its management.
Given the hereditary nature of these bleeding disorders, family members will be concerned about their carrier status and the risk to future children. These concerns can be addressed through genetic counselling for the extended family and, when appropriate, through carrier testing and antenatal diagnosis.<17> The emotional and psychologic stress of living with a severe bleeding disorder or of caring for someone with such a disorder may necessitate psychologic counselling. As a result of HIV, hepatitis C and hepatitis B infections, counselling needs for families have increased drastically.<18> Practice of universal blood precautions reduces the risk of viral transmission to family members. Sexual partners of those infected with HIV and HBV through contaminated blood products are at risk of acquiring HIV or HBV. Present knowledge suggests the concern is less for sexual partners of those infected with HCV.<19>. As for all patients with HIV and HBV infections and their partners, education about safer sexual and other practices to reduce infection transmission must be provided.<20> Susceptible family members of those infected with hepatitis B must be protected by hepatitis B vaccination.

Please click on the links below to find the full search methods.

EMBASE
PUBMED
CINAHL
CANCERLIT
WEB OF SCIENCE
PSYCH INFO
MEDLINE
BIOLOGICAL ABSTRACTS

OTHER VON WILLEBRAND SEARCHES

BLEEDING DISORDERS IN WOMEN
BLOOD COMPONENTS
COMPREHENSIVE CARE
FAMILY INVOLVEMENT IN CARE
GENETIC COUNCELING
DISEASE MANAGEMENT
PRE-OPERATIVE ASSESSMENT