Primary Immune Deficiency Clinical Trial
Official title:
Determinants of Health Status and Quality of Life in Patients With Primary Immunodeficiencies Inhereted Diagnosed During Childhood
Background: Most children with primary immune deficiency (PID) now reach adulthood. However,
few studies have evaluated their health status and health related quality of life (HRQoL).
Objective: To investigate long-term morbidity, the French Reference Center for PIDs
initiated a prospective multicenter cohort: the F-CILC (French Childhood Immune deficiency
Long-term Cohort). The data collected will be used to assess the physical health condition
of patients who reached adulthood and the impact on their quality of life.
Methods: Patients are asked to complete health status questionnaires. A severity score
(grade1 ["mild"] to grade 4 ["life-threatening"]) is assigned to each health condition. The
HRQoL of patients is compared to age- and sex-matched French normal values using the SF36
HRQoL questionnaire.
Capsule summary. This will be the first study of adult survivors of childhood PID describing
how the burden of health conditions affect their quality of life.
n/a
Observational Model: Cohort, Time Perspective: Prospective
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