Primary Immune Deficiency
Conditions
Brief summary
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.
Interventions
None listed
Sponsors
Assistance Publique Hopitaux De Marseille
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Healthy volunteers
No
Inclusion criteria
* Patient with primary immune deficiency diagnosed during childhood
Exclusion criteria
* Patients not willing to answer to quality of life questionnaires
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Numbers of patient with PID diagnosed during childhood experiencing a heavy burden of health conditions affecting their quality of life | 3 years |
Countries
France
Outcome results
None listed