Health-Related Quality of Life and Multidimensional Fatigue Scale in Children with Primary Immunodeficiencies

• Published in: Journal of clinical immunology Vol. 40; no. 4; pp. 602 - 609
• Main Authors: Ridao-Manonellas, Saida, Fábregas-Bofill, Anna, Núñez-Rueda, Gloria, González-Amores, Míriam, García-Prat, Marina, López-Seguer, Laura, Rivière, Jacques G., Martín-Nalda, Andrea, Mendoza-Palomar, Natalia, Melendo-Pérez, Susana, Soler-Palacín, Pere
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.05.2020; Springer Nature B.V
• Subjects: Biomedical and Life Sciences; Biomedicine; Caregivers; Chronic illnesses; Fatigue; Immunodeficiency; Immunology; Infectious Diseases; Internal Medicine; Medical Microbiology; Original Article; Patients; Pediatrics; Physical activity; Primary immunodeficiencies; Quality of life; Young adults; adolescence; fatigue; health-related quality of life; Primary immunodeficiencies; children
• ISSN: 0271-9142; 1573-2592
• DOI: 10.1007/s10875-020-00775-w

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.