Decreased health-related quality of life in children and adolescents with autoimmune hepatitis / Redução na qualidade de vida relacionada à saúde em crianças e adolescentes com hepatite autoimune

Abstract Objective: The objective of this study was to evaluate the health-related quality of life in children and adolescents with autoimmune hepatitis. Methods: A cross-sectional assessment with the Pediatric Quality of Life Inventory 4.0 (PedsQL 4.0) was completed for 80 patients with autoimmune hepatitis and 45 healthy controls. Demographic data, prednisone dose, disease remission state, disease severity, and abdominal pain were also evaluated. Results: Based on the child self-reports, physical, emotional, school, and total scores were significantly lower in autoimmune hepatitis patients when compared with controls (p < 0.05). Based on the parental reports, only the physical and total scores were significantly lower in autoimmune hepatitis patients versus controls (p < 0.05). Further analysis in autoimmune hepatitis patients with abdominal pain in the last month revealed significantly lower physical, social, and total median scores (p < 0.05). No differences were observed based on disease remission state or disease severity (p > 0.05). Autoimmune hepatitis patients who received a prednisone dose below 0.16 mg/kg/day at the time of the interview showed significantly higher physical scores than those who received a dose similar to or above 0.16 mg/kg/day (87.5 [50-100] vs. 75 [15.63-100], p = 0.006). Conclusions: Reduced scores in the physical, emotional, and school domains were observed in pediatric autoimmune hepatitis patients compared to control patients. Abdominal pain and corticosteroid dose negatively influenced the health-related quality of life in children and adolescents with autoimmune hepatitis.

Resumo Objetivo: Avaliar a qualidade de vida relacionada à saúde em crianças e adolescentes com hepatite autoimune (HAI). Métodos: Foi concluída uma avaliação transversal com o Inventário Pediátrico de Qualidade de Vida 4.0 (PedsQL 4.0) para 80 pacientes com hepatite autoimune e 45 controles saudáveis. Os dados demográficos, a dose de prednisona, o estado de remissão da doença, a gravidade da doença e dor abdominal também foram avaliados. Resultados: Com base nos autorrelatos das crianças, os escores físico, emocional, escolar e total foram significativamente menores em pacientes com hepatite autoimune em comparação com os controles (p < 0,05). Com base nos relatos dos pais, apenas os escores físico e total foram significativamente menores em pacientes com hepatite autoimune em comparação com os controles (p < 0,05). Uma análise adicional em pacientes com hepatite autoimune com dor abdominal no mês passado revelou escores médios físico, social e total significativamente menores (p < 0,05). Nenhuma diferença foi observada com base no estado de remissão da doença ou na gravidade da doença (p > 0,05). Os pacientes com hepatite autoimune que receberam uma dose de prednisona abaixo de 0,16 mg/kg/dia no momento da entrevista mostraram escores físicos significativamente maiores que os que receberam uma dose semelhante ou acima de 0,16 mg/kg/dia [87,5 (50-100) em comparação com 75 (15,63-100), p = 0,006]. Conclusões: Escores reduzidos nos domínios físico, emocional e escolar foram observados em pacientes pediátricos com hepatite autoimune em comparação com pacientes do grupo de controle. Dor abdominal e dose de corticosteroide influenciaram negativamente a qualidade de vida relacionada à saúde em crianças e adolescentes com hepatite autoimune.

Quality of life in children with thalassemia major following up at a tertiary care center in India (GOTQoL)

Background: This study aims to measure the quality of life (QoL) scores in children with thalassemia major following up at a tertiary care center for routine blood transfusion in comparison to healthy children.Methods: A case control study design was adopted, wherein on the QoL of 36 children with thalassemia in the age group 5 to 18 following up for blood transfusion at Goa Medical College, was measured using PedsQL' 4.0. This was compared to the QoL in age and gender matched healthy children from a government school. A higher score on a subscale indicates better quality of life on this instrument.Results: The children with thalassemia had lower mean scores on physical (67.85 vs 84.24; P <0.001), social (78.34 vs 87.95; P=0.002) and school (62.64 vs 79.48; P <0.001) functioning subscales compared to the healthy children. They also had lower mean psychosocial summary score (73.32 vs 82.01; P=0.003) and total health summary score (71.95 vs 82.57; P <0.001). The physical functioning subscale had significantly higher score among the children who were on chelation and also among the ones whose parents reported as being informed about the condition.Conclusions: The children with thalassemia have poor QoL in physical, social and school functioning domains. Improvement in QoL requires consolidated efforts on part of doctors, parents, school authorities and policy makers. These patients should be provided with low cost-effective chelation therapy. The parents need to be counselled about this disease by the treating team.

Validación por modelo de Rasch del Cuestionario de Calidad de Vida (PedsQL 4. 0®) en niños y adolescentes colombianos / Rasch Model in the Validation of the Paediatric Quality of Life Inventory TM 4. 0 (PedsQL 4.0TM) in Colombian Children and Adolescents

Introducción: La escala PedsQL 4.0® se ha probado confiable y sensible a los cambios en el estado de salud, y es de rápida y fácil aplicación. El propósito de este estudio es validar la PedsQL 4.0®a partir de la aplicación del modelo de Rasch en niños y adolescentes colombianos de ambos sexos. Métodos: Se llevó a cabo un estudio observacional de validación de instrumentos de medición. Se realizó un muestreo no probabilístico por conveniencia, conformado por 375 sujetos de 5 a 18 años de edad y 500 cuidadores de menores de 2 a 18 años en cinco ciudades colombianas. Las propiedades psicométricas de la escala se analizaron según el modelo de Rasch, entre ellas el ajuste, la separación y el funcionamiento diferencial del ítem. Resultados: Se encontró un adecuado ajuste de los datos al modelo de Rasch. La dimensión social presentó mayor dificultad que la dimensión de salud física en las dos versiones. Se observó consistencia interna de los ítems, mientras que para las personas, los valores de confiabilidad y separación estuvieron por debajo de lo establecido. El funcionamiento diferencial del ítem ocurrió en unas pocas variables, en especial, al comparar por ciudad. Las curvas características de los ítems presentaron umbrales desordenados. Conclusiones: Los ítems presentaron una consistencia adecuada; el análisis por personas no mostró una separación adecuada; sin embargo, se encontraron umbrales desordenados en las categorías de respuesta. No se presentó funcionamiento diferencial del ítem por sexo o por enfermedad, pero llama la atención que el sí ocurriera entre ciudades.

Introduction: The aim of this study was to validate the PedsQL 4.0TM in Colombian children and adolescents using the Rasch model. The Paediatric Quality of Life Inventory (PedsQL 4.0TM) has demonstrated to be a reliable and sensitive measurement to changes in health status, as well as being quick and easy to use. Methods: Validation study of measurement tools. The PedsQL 4.0TMwas applied to a convenience sample of 375 children and adolescents between 5 and 17 years old and 500 caregivers of children between 2 and 18 years old in five Colombian cities. The psychometric properties were analysed according to the Rasch model, including adjustment, separation, and differential item functioning (DIF). Results: The Rasch model provided adequate fits to data. The social dimension, for both versions, had greater difficulty than the physical health dimension. Internal consistency for the items was observed, while for individuals, the values of reliability and separation were lower than that established. The DIF occurred in very few variables, especially when comparing cities. The characteristic curves for the items presented disordered thresholds. Conclusions: The items had adequate internal consistency. Analysis showed adequate individual separation, but disordered thresholds were found in the response categories. No DIF was observed by sex or disease, but it is noteworthy that the DIF occurred between cities

Life quality of children with autistic disorder and its influencing factors / 中华实用儿科临床杂志

Objective To investigate the life quality status in autistic disorder children and its influencing factors.Methods Pediatric Quality of Life Inventory (PedsQL4.0) was used to measure the life quality of 200 children with autistic disorder and 120 healthy children.Application of Gesell Development Diagnosis Scale (1981) test was used for intelligence development.Clancy Autism Behavior Scale,Autism Behavior Checklist,and Childhood Autism Rating Scale were used to evaluate the illness degree.Results The life quality of autistic disorder group was lower than that of control group in the scores of physical functioning,emotional functioning,social functioning,mental domain and the totals cores of PedsQL,the differences were significant (all P ＜0.01).High-functioning autism in all aspects and the overall life quality were higher than those of low function group,the differences were statistically significant (all P ＜0.01).By using variance analysis,intelligence factors had an impact on the patient's life quality,the difference was statistically significant(P ＜ 0.01).Correlation analysis results suggested that the autism condition degree was heavier,the intelligence level was lower,the life quality was worse,and the difference was statistically significant (P ＜ 0.05).Conclusion Children with autistic disorder suffer grievous influence in life quality.

Health-related quality of life of Filipino pediatric liver transplant recipients and children with chronic liver disease using PedsQL4.0™ Tagalog version

BACKGROUND: The Pediatric Quality of Life (PedsQL4.0TM) scale has been shown to be reliable and valid in assessing health related quality of life (HRQOL). However, its Tagalog version has not been field-tested. OBJECTIVES: To determine the reliability and validity of the PedsQL4.0TM Tagalog version and to compare the HRQOL of Filipino liver transplant (LT) recipients, children with chronic liver disease (CLD) and healthy controls. METHODOLOGY: This is a cross-sectional study that included Filipinos 2-18 years who had undergone LT and those with CLD. PedsQL4.0TM Tagalog version was administered as a proxy-report for caregivers and child-report for children >5 years. RESULTS: 237 PedsQL4.0 questionnaires were completed. Reliability was demonstrated for psychosocial (Cronbach =0.86-0.88), physical ( =0.86-0.88) and total ( =0.89-0.92) health summary scores. Construct validity showed a medium to large effect size (0.39-1.34) between patients and controls. No difference was noted on the total health summary scores and the individual domains between LT recipients and controls while the scores of patients with CLD were significantly lower compared to LT recipients and healthy subjects. CONCLUSIONS: The PedsQL4.0TM Tagalog version is a valid and reliable HRQOL tool. The HRQOL of LT recipients is similar to healthy children while CLD patients had poorer HRQOL.