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.
Subject(s)
Fatigue/epidemiology , Primary Immunodeficiency Diseases/epidemiology , Adolescent , Adult , Child , Child, Preschool , Female , Humans , Infant , Male , Quality of Life , Severity of Illness Index , Social Discrimination , Spain/epidemiology , Young AdultABSTRACT
OBJECTIVE: To describe the parental knowledge and care of fever in children under 2years. Relate this data with socio-demographic with characteristics. DESIGN: Cross-sectional and correlation multicenter study. LOCATION: Five teams of Primary Care in Barcelona. PARTICIPANTS: Parents of children under 2years attended to administer a vaccine included in the pediatric systematic calendar. A total of 311 subjects participated. MAIN MEASUREMENTS: The main variables are 9 items of knowledge and 8 of care or management of fever obtained with the adaptation of the questionnaire by Chiappini et al. (2012). RESULTS: 69.8% had a correct care/management of fever. 3.9% matched all items of knowledge. The knowledge score is lower in people with no education (p=0.03); higher in Europe and South America and lowest in Asia and Africa (P<.001). 100% of patients that had chronic problems answered correctly all items of fever care (P=.03). It is important to note that the correlation between the scores of knowledge and management is positive (rho=0.15, P=.008). CONCLUSIONS: A correct care of fever is observed despite the low knowledge. A good strategy to promote a correct care of febrile child is to do sanitary education with update information and adapted it to parents, focusing on the differences between ethnic groups because they seem to have inaccurate beliefs about fever.