Health-Related Quality of Life and Multidimensional Fatigue Scale in Children with Primary Immunodeficiencies
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ORIGINAL ARTICLE
Health-Related Quality of Life and Multidimensional Fatigue Scale in Children with Primary Immunodeficiencies Saida Ridao-Manonellas 1 & Anna Fábregas-Bofill 1 & Gloria Núñez-Rueda 1 & Míriam González-Amores 1 & Marina García-Prat 1 & Laura López-Seguer 1 & Jacques G. Rivière 1 & Andrea Martín-Nalda 1 & Natalia Mendoza-Palomar 1 & Susana Melendo-Pérez 1 & Pere Soler-Palacín 1,2 Received: 21 November 2019 / Accepted: 23 March 2020 # Springer Science+Business Media, LLC, part of Springer Nature 2020
Abstract Purpose Patients with primary immunodeficiency disease (PID) have an increased risk of experiencing physical activity limitations, social difficulties, and psychological problems due to their chronic condition. Evaluation of their health-related quality of life (HRQOL) and fatigue is crucial in these patients to help understand their complex disease and provide adequate medical care. Methods In this study, we evaluated HRQOL and fatigue in pediatric and young adult patients with PID attending our center. Participants completed the Pediatric Quality of Life Inventory (PedsQL), version 4.0, and the PedsQL multidimensional fatigue module, standard version. Results Fifty-three PID patients were recruited (age range: 2–23 years). The mean HRQOL score obtained was 66.61 (SD: 18.73) out of 100, and the emotional and work/school dimensions were the ones most highly affected. There were no significant differences in reported quality of life between patients and their caregivers. The mean patient-reported fatigue value was 68.81 (SD: 17.80) out of 100, and the rest-related dimension was the one most highly affected. In the caregivers’ assessment, general fatigue was the most highly affected dimension. Conclusions The results of this study show that quality of life is poor and fatigue measures are considerably increased in our young adult and pediatric patients with PIDs. These findings can indicate areas requiring more intensive interventions, and they will serve as a basis for comparison of future results. Keywords Primary immunodeficiencies . health-related quality of life . fatigue . children . adolescence
Introduction Primary immunodeficiency diseases (PIDs) are a group of genetic disorders caused by quantitative and/or qualitative impairment of the immune response. PID patients have an increased Electronic supplementary material The online version of this article (https://doi.org/10.1007/s10875-020-00775-w) contains supplementary material, which is available to authorized users. * Pere Soler-Palacín [email protected] 1
Paediatric Infectious Diseases and Immunodeficiencies Unit (UPIIP), Hospital Infantil Vall d’Hebron (HIVH), Jeffrey Modell Foundation Excellence Centre, ERN RITA Centre, Vall d’Hebron Research Institute (VHIR), Passeig Vall d’Hebron 119-129, 08035 Barcelona, Catalonia, Spain
2
Universitat Autònoma de Barcelona, Barcelona, Catalonia, Spain
susceptibility to recurrent and to severe infections and a predisposition to develop allergies, autoimmune conditions, inflammation, and cance
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