COMPREHENSIVE CARE
CLINICAL PRACTICE GUIDELINES
Hemophilia and von Willebrand's disease: 2. Management
(Edition 2, Update 2 [1999-07-07])
http://ahcdc.medical.org/Care_Assessment.htm
Comprehensive care
The aim of comprehensive care is to help patients and their
families make decisions affecting their physical, psychologic
and social
health in the light of the most recent medical knowledge. Given
the rarity and complexity of inherited bleeding disorders,
it is advisable for all patients to be treated, or at
least followed
regularly, at a comprehensive care centre that offers expertise
in dealing with the wide range of medical problems that these
patients may encounter. Smaller centres with few patients cannot
develop or maintain this multidisciplinary expertise but can
provide routine care in consultation with a comprehensive care
centre.<16> The composition of the comprehensive care
team reflects the fact that management involves more than the
treatment
of acute bleeding episodes.
The comprehensive care team
The "primary" team should consist of a nurse coordinator,
a medical director (preferably a hematologist with an interest
and expertise in hemostasis), a physiotherapist and a social
worker. <16> This group reviews, regularly, all patients
receiving care at the centre and addresses their medical, familial
and social concerns. The nurse coordinator, who coordinates the
provision of education and care for patients and their families,
is usually the first contact for patients with an acute problem
or requiring follow-up.
Arrangements for the involvement of other specialists are made
by the primary team as the need arises.<16> The "referral" support
team should include specialists in rheumatology, orthopedic surgery,
dentistry, clinical genetics, infectious disease, hepatology
and gynecology. Specialists in physiatry, psychology and psychiatry
should also be available. Care of patients with HIV infection
should be supervised by specialized multidisciplinary clinics.
Patients with HCV and HBV infections should be managed in conjunction
with specialists in liver disease.
Specialized services, which must be available, are a blood bank with specific expertise in coagulation factor concentrates, and a laboratory capable of performing a full range of tests of hemostasis.
Please
note that this search was done for both hemophilia A & B
as well as von Willebrand’s Disease.
Please
click on the links below to find the full search methods.
EMBASE
PUBMED
CINAHL
CANCERLIT
INTERNATIONAL PHARMACEUTICAL ABSTRACTS
WEB OF SCIENCE
PSYCH INFO
MEDLINE
SOCIAL SCIENCES
OTHER VON WILLEBRAND SEARCHES
BLEEDING DISORDERS IN WOMEN
BLOOD COMPONENTS
COMPREHENSIVE CARE
FAMILY INVOLVEMENT IN CARE
GENETIC COUNCELING
DISEASE MANAGEMENT
PRE-OPERATIVE ASSESSMENT