The aim of this observational study is to evaluate the quality of life in patients with congenital afibrinogenemia using the Haemo-QoL SF for kids and the Haem-A-QoL for adult patients.
In this observational study, children and adults suffering from congenital afibrinogenemia confirmed by biology will be enrolled. All patients will receive a questionnaire on quality of life in their own language during a routine visit and filled out by the patient at home. A general questionnaire will be filled out by the patient's physician.
Study Type
OBSERVATIONAL
Enrollment
250
Children's Hospital of Orange Count
Orange, California, United States
The influence of the afibrinogenemia on the patients' quality of life assessed by the Haemo-QoL SF questionnaire (for children) and the Haem-A-QoL questionnaire (for adult)
The quality of life questionnaire includes item assessing: * Physical health * Feeling * View * Family * Friends * Others * Sport and school * Treatment * Perceived support * Dealing * Future * Relationship
Time frame: At inclusion
Impact of the afibrinogenemic patient's clinical phenotype on the patients' quality of life
The clinical phenotype will be assessed by a general questionnaire including data on: * Bleeding events * Bleeding events treatment * Thrombotic events * Thrombotic events treatment * Fibrinogen replacement (type of product and modality of replacement)
Time frame: At Inclusion
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