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

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.

Análisis de los cuidados y los conocimientos parentales sobre la fiebre en la infancia / Analysis of parental knowledge and care in childhood fever

Objetivo: Describir los conocimientos y los cuidados parentales de la fiebre en niños menores de 2 años y relacionarlos con características sociodemográficas. Diseño: Estudio descriptivo transversal de correlación multicéntrico. Emplazamiento: Realizado en 5 equipos de atención primaria de Barcelona. Participantes: Padres, madres o tutores legales de niños menores de 2 años que acuden para la administración de una vacuna incluida en el calendario sistemático. Participaron un total de 311 sujetos. Mediciones principales: Las variables principales son 9 ítems de conocimientos y 8 de cuidados o manejo de la fiebre obtenidos con la adaptación del cuestionario de Chiappini et al. (2012). Resultados: El 69,8% tienen un manejo/cuidado correcto de la fiebre. Un 3,9% acertaron todos los ítems de conocimientos. La puntuación de conocimientos es menor en personas sin estudios (p=0,03), mayor en europeos y sudamericanos y menor en Asia y África (p<0,001). El 100% de los pacientes crónicos tuvieron todos los ítems de cuidado/manejo correctos (p=0,03). Se observa que la correlación entre las puntuaciones de conocimiento y manejo es positiva (rho=0,15, p=0,008). Conclusiones: Se observan unos cuidados correctos de la fiebre a pesar de la falta de conocimientos. Una buena estrategia para fomentar el adecuado manejo del niño febril es dar información actualizada y adaptada a los padres, incidiendo en los grupos étnicos que parecen tener creencias inexactas sobre la fiebre (AU)

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 2 years 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 (AU)

[Analysis of parental knowledge and care in childhood fever]. / Análisis de los cuidados y los conocimientos parentales sobre la fiebre en la infancia.

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.

Hábitos del sueño en niños de 8 a 12 años escolarizados en el barrio «La Mina» / Sleep habits in 8-to-12-year-old school children from the «La Mina» area

OBJETIVO: describir los hábitos del sueño en la población infantil de entre 8 y 12 años escolarizados; y estudiar la influencia de factores sociodemográficos y de los hábitos de sueño en el sobrepeso y la obesidad. MÉTODO: estudio descriptivo transversal en niños y niñas de 8 a 12 años, escolarizados entre 3º y 6º de Educación Primaria (EP) del barrio de La Mina de Sant Adrià de Besòs (Barcelona). Recogida de los datos: cuestionario Children Sleep Habits Questionnaire (CSHQ). Se calculó el percentil IMC (pIMC) según las curvas y tablas de crecimiento de Orbegozo. Tratamiento de los datos: pruebas de contraste de hipótesis (Chi cuadrado, U de Mann-Whitney y Kruskall Wallis). RESULTADOS: se estudiaron 337 niños/as. Un 4,2% de los escolares tenía sobrepeso y un 23,7% obesidad. El 55,9% de quienes tenían normopeso habitualmente estaba preparado para ir a dormir, en contraposición del 42,5% de quienes presentaban obesidad (p= 0,02). El 29,5% se mantenía despierto/a en la cama mientras sus padres creían que estaba durmiendo (aumenta el porcentaje a medida que aumenta el curso (p= 0,03), en los varones (p= 0,01) y en con obesidad (p= 0,04). Existía diferencia estadísticamente significativa entre las escuelas y la puntuación de la dimensión relacionada con los trastornos del sueño y la puntuación total de la suma de todas las dimensiones (p< 0,01); se obtuvieron mejores puntuaciones en el colegio concertado. CONCLUSIONES: los escolares de mayor edad y las niñas siguen mejores hábitos del sueño. Atendiendo a las puntuaciones obtenidas en el CSHQ, quienes estaban en la escuela concertada reflejaron mejores hábitos del sueño. Los escolares con normopeso tienen mejores hábitos de sueño

OBJECTIVE: to describe the sleep habits in a population of 8-to-12-year-old school children, and to study the influence of sociodemographical factors and sleep habits upon excess weight and obesity. METHOD: a descriptive transversal study in 8-to-12-year-old boys and girls, attending from 3rd to 6th term of Primary Education (PE), at the La Mina de Sant Adrià de Besòs neighbourhood in Barcelona. Data collection: Children Sleep Habits Questionnaire (CSHQ). The BMI rate was calculated according to growth curves and tables by Orbegozo. Data treatment: hypothesis contrast tests (Chi Square, Mann-Whitney's U-Test, and Kruskall Wallis). RESULTS: the study included 337 boys and girls; 4.2% of them had excess weight, and 23.7% suffered obesity. From those school children with normal weight, 55.9% were usually ready to go to sleep, unlike the 42.5% who presented obesity (p= 0.02). 29.5% stayed awake in bed while their parents believed they were sleeping; the rate increased for latter terms (p= 0.03), for boys (p= 0.01) and for those with obesity (p= 0.04). There was a statistically significant difference between schools and the score in the dimension associated with sleep disorders and the total score for the sum of all dimensions (p< 0.01); there were better scores in the private school with public funding. CONCLUSIONS: older school-children and girls presented better sleep habits. According to the scores from the CSHQ, those attending the private school with public funding showed better sleep habits. Schoolchildren with normal weight have better sleep habits