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Article Dans Une Revue The Journal of Pediatrics Année : 2018

Burden of Poor Health Conditions and Quality of Life in 656 Children with Primary Immunodeficiency

Pascal Auquier
  • Fonction : Auteur
Fanny Fouyssac
  • Fonction : Auteur
Isabelle Pellier
  • Fonction : Auteur
Maya Allouche
  • Fonction : Auteur
Carolina Brito de Azevedo
  • Fonction : Auteur
Despina Moshous
  • Fonction : Auteur
Marlène Pasquet
Nathalie Aladjidi
  • Fonction : Auteur
Caroline Thomas
Virginie Gandemer
Gérard Michel
  • Fonction : Auteur

Résumé

OBJECTIVE: To gain insight into how primary immunodeficiencies (PIDs) affect children's health status and quality of life. STUDY DESIGN: The French Reference Center for PIDs conducted a prospective multicenter cohort that enrolled participants who met all criteria: patients included in the French Reference Center for PIDs registry, children younger than18 years, and living in France. Participants were asked to complete both a health questionnaire and a health-related quality of life (HR-QoL) questionnaire. A severity score was assigned to each health condition: grade 1 (mild) to grade 4 (life-threatening). HR-QoL in children was compared with age- and sex-matched French norms. RESULTS: Among 1047 eligible children, 656 were included in the study, and 117 had undergone hematopoietic stem cell transplantation; 40% experienced at least one grade 4 condition, and 83% experienced at least one grade 3 or 4 condition. Compared with the French norms, children with PID scored significantly lower for most HR-QoL domains. Low HR-QoL scores were associated strongly with burden of poor conditions. CONCLUSIONS: Our results quantify the magnitude of conditions in children with PID and demonstrate that the deleterious health effects borne by patients already are evident in childhood. These results emphasize the need to closely monitor this vulnerable population and establish multidisciplinary healthcare teams from childhood. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02868333 and EudraCT 2012-A0033-35.
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Dates et versions

hal-02349436 , version 1 (05-11-2019)

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Vincent Barlogis, Nizar Mahlaoui, Pascal Auquier, Fanny Fouyssac, Isabelle Pellier, et al.. Burden of Poor Health Conditions and Quality of Life in 656 Children with Primary Immunodeficiency. The Journal of Pediatrics, 2018, 194, pp.211--217.e5. ⟨10.1016/j.jpeds.2017.10.029⟩. ⟨hal-02349436⟩
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