Calidad de vida relacionada con la salud en adolescentes con hipotiroidismo congénito permanente / Health-related quality of life of adolescents with congenital hypothyroidism

Introducción: El hipotiroidismo congénito puede afectar el estado emocional, las relaciones sociales y el nivel de independencia del adolescente. Estos aspectos pueden influir en la percepción de su calidad de vida relacionada con la salud. Objetivo: Evaluar la calidad de vida relacionada con la salud en adolescentes con hipotiroidismo congénito permanente e identificar su posible relación con algunas características sociodemográficas y clínicas. Método: Se realizó un estudio observacional descriptivo de corte transversal en 40 adolescentes, varones y mujeres entre 10 y 19 años, registrados por el Programa Cubano de Diagnóstico Precoz de Hipotiroidismo Congénito, con el cuestionario genérico PedsQL TM ®, versión 4.0 para uso pediátrico. Resultados: Los mayores puntajes correspondieron a los adolescentes entre 10-14 años, del sexo masculino, nivel educacional primario, sin consumo de sustancias nocivas y que mostraron satisfacción con la vida familiar y un buen control de la enfermedad. Conclusiones: La mayoría de los adolescentes tienen una buena percepción de su calidad de vida relacionada con la salud. La dimensión y la función que más aportaron fueron la física y la social, respectivamente(AU)

Introduction: Congenital hypothyroidism can affect the emotional state, social relationships and the level of independence of adolescents. These aspects can influence the perception of their health-related quality of life. Objective: To evaluate the health-related quality of life of adolescents with permanent congenital hypothyroidism and to identify possible relationship with some sociodemographic and clinical characteristics. Methods: A cross-sectional descriptive observational study was carried out in 40 adolescents, male and female, between 10 and 19 years old, who were registered by the Cuban Program for Early Diagnosis, using the generic PedsQL TM ® questionnaire, version 4.0 for pediatric use, as an instrument. Results: The highest scores corresponded to adolescents between 10-14 years old, male, primary educational level, without harmful substance use and who showed satisfaction with family life and good control of the disease. Conclusions: Most adolescents have good perception of their health-related quality of life. The dimension and function that contributed the most were physical and social, respectively(AU)

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.

Child-Report And Parent-Report Of Health-Related Quality Of Life Among 9-11 Years Old Obese School Children In Terengganu, Malaysia

@#Obese children had impaired psychosocial status as they generally tend to be socially isolated, have poor self-esteem, anxiety, mood disorder (depression and bipolar disorder) and eating disorder. The aim of this study was to investigate the child-report and parent-report of HRQoL among 9-11 years old obese school children in Malaysia and to determine the associated factors of HRQoL among obese children in Malaysia. This study was a cross-sectional study involving 101 obese Malay primary school children aged 9-11 years old from eleven primary schools in Kuala Terengganu which were selected via convenience sampling. Height and weight of the respondents were measured and their BMI was calculated. Health-related quality of life (HRQoL) was measured using PedsQL version 4.0. The mean age of the respondents was 10.02 ± 0.82 years old with mean BMI z-score was 3.01 ± 0.60. There were significance differences between boys and girls in; 1) emotional domain score for child-report QoL (p=0.019) using paired t-test and 2) psychosocial domain score for parent-report QoL (p=0.025). Regression analysis found that age and gender were the associated factors for Psychological Health for obese children (p<0.005). Being obese had negative effects on children’s quality of life. Various strategies interventions should be done to improve the HRQoL of these obese children. A multidisciplinary approach in schools must be organized to encourage a healthy lifestyle as part of routine among the school children.

Reliability and Validity of the PedsQL Multidimensional Fatigue Scale with Short Stature / 中山大学学报(医学科学版)

Objective]To evaluate the reliability and validity of Chinese version of the Pediatric Quality of Life Inventory PedsQL multidimensional fatigue scale among short stature.[Methods]The Cross-sectional surveys was made using this Chinese scale. A total of 570 children and adolescents and their parents were investigated. 522 valid questionnaires were collected,of which 138 were short stature and 384 with normal height ,Analysis feasibility ,reliability and validity of this Chinese version scale.[Results]Cronbach alpha coefficients of the parent-proxy report was 0.89,the dimensions ranged from 0.75 to 0.87,Cronbach alpha coefficients of the child self-report was 0.86,the dimensions ranged from 0.70 to 0.80;Test retest reliability was satisfied for intra-class correlation coefficient(ICC)exceeded 0.9 in all dimensions. Correlation coefficients between items and their belong dimensions higher than those with other dimensions;The result of confirmatory factor analysis indicated the main indexes χ2/df = 2.62,CFI =0.93,TLI=0.92,NFI=0.89,RFI=0.87,IFI=0.93,RMSEA=0.056 of self-report andχ2/df=3.12,CFI=0.94,TLI=0.92, NFI=0.91,RFI=0.89,IFI=0.94,RMSEA=0.064 of proxy-report all met the criteria of psychometrics.[Conclusion]The Chinese version of PedsQL Multidimensional Fatigue Scale has good feasibility ,reliability and validity ,and can be used to evaluate the fatigue of short stature in children and adolescents in Chinese cultural background.

Child-Report And Parent-Report Of Health-Related Quality Of Life Among 9-11 Years Old Obese School Children In Terengganu, Malaysia

Obese children had impaired psychosocial status as they generally tend to be socially isolated, have poor self-esteem, anxiety, mood disorder (depression and bipolar disorder) and eating disorder. The aim of this study was to investigate the child-report and parent-report of HRQoL among 9-11 years old obese school children in Malaysia and to determine the associated factors of HRQoL among obese children in Malaysia. This study was a cross-sectional study involving 101 obese Malay primary school children aged 9-11 years old from eleven primary schools in Kuala Terengganu which were selected via convenience sampling. Height and weight of the respondents were measured and their BMI was calculated. Health-related quality of life (HRQoL) was measured using PedsQL version 4.0. The mean age of the respondents was 10.02 ± 0.82 years old with mean BMI z-score was 3.01 ± 0.60. There were significance differences between boys and girls in; 1) emotional domain score for child-report QoL (p=0.019) using paired t-test and 2) psychosocial domain score for parent-report QoL (p=0.025). Regression analysis found that age and gender were the associated factors for Psychological Health for obese children (p<0.005). Being obese had negative effects on children’s quality of life. Various strategies interventions should be done to improve the HRQoL of these obese children. A multidisciplinary approach in schools must be organized to encourage a healthy lifestyle as part of routine among the school children.

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.

Calidad de vida en niños con leucemia linfoblástica aguda durante la inducción a la remisión mediante el PedsQL Cancer Module© / Quality of life in children with acute lymphoblastic leukemia during induction therapy with PedsQL Cancer Module©

Introducción. Con los tratamientos disponibles en la actualidad, más de 80% de los niños con leucemia aguda linfoblástica (LAL) pueden sobrevivir. En general, y específicamente en nuestra institución, no se conoce bien la calidad de vida (CV) de estos niños. El objetivo de este estudio fue medir la CV en niños durante la inducción a la remisión (primera fase del tratamiento) con el PedsQL Cancer Module©. Métodos. Se realizaron 2 mediciones a niños con LAL de diagnóstico reciente. Se incluyeron 26 pacientes estables de 2 a 18 años de edad con LAL, a las 2 semanas y a los 2 meses del diagnóstico. Se dividieron en 4 grupos: 2-4, 5-7, 8-12 y 13-18 años. Resultados. Se determinó que la CV se modificó al finalizar la inducción a la remisión. En la segunda medición se observó mejor CV con relación a un proceso de posible adaptación al tratamiento, así como por mejoría de los síntomas relacionados a la enfermedad. Conclusión. El PedsQL Cancer Module© fue útil para medir la CV y detectar cambios en los niños con LAL en inducción a la remisión.

Introduction. Survival of children with acute lymphoblastic leukemia (ALL) is 80% in accordance with actual protocols. We ignore quality of life (QoL) during these chronic treatments, especially in our institution. The aim of this pilot study was to measure QoL in stable children with ALL during the first part of treatment (induction therapy) with PedsQL Cancer Module©. Methods. We made two measurements in children with recent diagnosis of ALL and determined changes in the QoL between the beginning and the end of induction therapy. We included 26 patients from 2 to 18 years of age with ALL, at 2 weeks and 2 months after diagnosis, and divided them into four groups: 2-4, 5-7, 8-12, and 13-18 years of age. Results. In the second measurement, we observed a better QoL in relation to an adaptation process in the child and remission of symptoms. Conclusions. PedsQL Cancer Module© was a useful instrument for measuring QoL and detected changes in children with ALL during induction therapy.

Qualidade de vida de crianças e adolescentes de São Paulo: confiabilidade e validade da versão brasileira do questionário genérico Pediatric Quality of Life InventoryTM versão 4.0 / Quality of life of children and adolescents from São Paulo: reliability and validity of the Brazilian version of the Pediatric Quality of Life InventoryTM version 4.0 Generic Core Scales

OBJETIVOS: Avaliar a confiabilidade e a validade da versão brasileira do questionário genérico Pediatric Quality of Life InventoryTM (PedsQL TM 4.0) e mensurar a qualidade de vida de crianças e adolescentes saudáveis e de pacientes com doenças reumáticas. MÉTODOS: No processo de validação, seguimos a metodologia proposta pelos idealizadores da versão original em inglês do questionário PedsQL TM 4.0. O instrumento foi administrado por entrevista em dois grupos: 240 crianças e adolescentes aparentemente saudáveis de São Paulo (SP) e 105 pacientes com doenças reumáticas crônicas, pareados por idade, e aos respectivos pais ou responsáveis. O questionário foi aplicado nos cuidadores e nas crianças separadamente e no mesmo dia. RESULTADOS: Os valores do teste alfa de Cronbach situaram-se entre 0,6 e 0,9 para todas as dimensões, demonstrando uma consistência interna adequada. Os pacientes com doenças reumáticas apresentaram uma redução significativa na qualidade de vida quando comparados com as crianças saudáveis (p < 0,0001). A validade construída da versão brasileira do PedsQL TM 4.0 também foi comprovada. Observamos altos níveis de correlação entre os relatos dos cuidadores e dos pacientes na dimensão física (r = 0,77, p < 0,001) e escolar (r = 0,73, p < 0,001). A correlação foi mais baixa nas dimensões emocional e social (r = 0,40 e 0,59, respectivamente, p < 0,001). CONCLUSÕES: O questionário mostrou ser confiável, válido e de fácil e rápida aplicação. A qualidade de vida dos pacientes com doenças reumáticas foi mais baixa, o que reforça a necessidade de uma abordagem ampla aos pacientes com doenças crônicas, focada nos aspectos psicossociais.

OBJECTIVES: To evaluate the reliability and validity of the Brazilian version of the Pediatric Quality of Life InventoryTM (PedsQL TM 4.0) Generic Core Scales and measure the quality of life of healthy children and adolescents and patients with rheumatic diseases. METHODS: We followed the translation methodology proposed by the developer of the original English version of the PedsQL TM 4.0. The instrument was administered by interviews in two groups: 240 apparently healthy children and adolescents from São Paulo (SP, Brazil) and 105 patients with chronic rheumatic diseases, matched by age, as well as to their respective parents or caregivers. The parent proxy-report was administered to the children's parents or caregivers separately on the same day. RESULTS: Cronbach's alpha values were between 0.6 and 0.9 for all dimensions, demonstrating adequate internal consistency. Patients with rheumatic diseases reported significantly lower PedsQL TM scores on all dimensions when compared to the healthy control group (p < 0.0001). Construct validity of the Brazilian Portuguese version of the PedsQL TM 4.0 was also confirmed. Parent proxy-report of patients with rheumatic diseases highly correlated with child self-report for physical functioning (r = 0.77, p < 0.001) and school functioning (r = 0.73, p < 0.001). Lower correlations were observed for emotional and social functioning (r = 0.40 and 0.59, respectively, p < 0.001). CONCLUSIONS: The tool demonstrated reliability, validity and the administration was fast and easy. Quality of life of patients with rheumatic diseases was significantly lower than the healthy control group, supporting the necessity of a comprehensive approach to rheumatic disease management, focused on the psychosocial dimensions.