Health-related quality of life in Iranian adolescents: a psychometric evaluation of the self-report form of the PedsQL 4.0 and an investigation of gender and age differences.

BACKGROUND: Research on the psychometric properties of the Persian self-report form of the Pediatric Quality of Life Inventory Version 4.0 (PedsQL 4.0) in adolescents has several gaps (e.g., convergent validity) that limit its clinical application and therefore the cross-cultural impact of this measure. This study aimed at investigating the psychometric properties of the PedsQL 4.0 and the effects of gender and age on quality of life in Iranian adolescents. METHOD: The PedsQL 4.0 was administered to 326 adolescents (12-17 years). A subsample of 115 adolescents completed the scale two weeks after the first assessment. Confirmatory Factor Analysis (CFA), correlation of the PedsQL 4.0 with the Weiss Functional Impairment Rating Scale-Self-report (WFIRS-S), and Item Response Theory (IRT) analysis were conducted to examine validity. Cronbach's alpha, McDonald's Omega, and Intra class correlation (ICC) were calculated as well to examine reliability. Gender and age effects were also evaluated. RESULTS: Internal consistency and test-retest reliability of the total PedsQL 4.0 scale was .92 and .87, respectively. The PedsQL 4.0 scores showed negative moderate to strong correlations with the WFIRS-S total scale. The four-factor model of the PedsQL 4.0 was not fully supported by the CFA-the root mean square error of approximation and the comparative fit index showed a mediocre and poor fit, respectively. IRT analysis indicated that all items of the PedsQL 4.0 fit with the scale and most of them showed good discrimination. The items and total scale provided more information in the lower levels of the latent trait. Males showed significantly higher scores than females in physical and emotional functioning, psychosocial health, and total scale. Adolescents with lower ages showed better quality of life than those with higher ages in all scores of the PedsQL 4.0. CONCLUSION: The PedsQL 4.0 showed good psychometric properties with regard to internal consistency, test-retest reliability, and convergent validity in Iranian adolescents, which supports its use in clinical settings among Persian-speaking adolescents. However, factor structure according to our CFA indicates that future work should address how to improve fit. In addition, studies that include PedsQL 4.0 should consider gender and age effects were reported.

Health-Related Quality of Life of Young People With and Without Chronic Conditions.

OBJECTIVE: The aim of this meta-analysis was to compare levels of health-related quality of life (HRQOL) among children with and without chronic physical and/or sensory conditions, based on PedsQL 4.0 General Core Scales. METHODS: Studies were identified with electronic databases (CINAHL, PSYCINFO, MEDLINE, Google Scholar, PSYNDEX) and from the PedsQL website. We included controlled studies that compared PedsQL scores of children (mean age < 18 years) with and without chronic physical and/or sensory conditions and uncontrolled studies on children with chronic physical and/or sensory conditions from countries where data from peers without chronic conditions have been published. Random-effects meta-analyses were computed. RESULTS: In total, 1,231 studies fulfilled the inclusion criteria. There were large declines of the total and physical score as well as medium-sized declines of psychosocial health and its subscales, based on criteria of interpreting effect sizes by Cohen [Cohen, J. (1992). A power primer. Psychological Bulletin, 112, 155-159]. Children with cerebral palsy and spina bifida showed the largest declines across all scales, but significant declines emerged in all compared 29 chronic conditions. We identified moderating effects of duration of the chronic condition, rater, child gender, country, sociodemographic equivalence of the compared groups, type of control condition, and publication status. CONCLUSIONS: Young people with chronic health conditions should be screened for HRQOL, and the profile across different domains should be preferred over the use of a sum score. Child self-reports are particularly relevant for assessing emotional and social functioning. Effective measures aimed at improving HRQOL are needed, especially if the chronic condition leads to severe declines of physical functioning.

Health-related quality of life in children with osteogenesis imperfecta: a large-sample study.

In this large-sample study, we demonstrated that osteogenesis imperfecta (OI) significantly impaired the quality of life (QoL) in children. Moderate/severe OI patients had worse QoL scores than patients with mild OI. Furthermore, the QoL for OI patients was correlated with the presence of pathogenic gene mutations. INTRODUCTION: Osteogenesis imperfecta (OI) is a hereditary disease characterized by multiple fragility fractures and progressive skeletal deformities. No detailed investigations about the quality of life (QoL) have been carried out in a large sample of patients with OI. We evaluated the QoL and its influencing factors in a large and well-characterized OI cohort. METHODS: We used a validated questionnaire of PedsQL 4.0 to evaluate the health-related quality of life (HRQoL) of children and adolescents with OI. We compared HRQoL among patients with OI types I, III, and IV. The relationship between HRQoL and pathogenic mutations in candidate OI genes was investigated. We also evaluated the influencing factors of HRQoL in OI patients. RESULTS: A total of 138 children with OI and 138 healthy controls were enrolled in this study. The HRQoL scores of OI patients were 64.4 ± 30.0, 71.9 ± 22.2, 75.7 ± 24.8, 63.7 ± 24.5, and 68.9 ± 22.0 in physical, emotional, social, school functioning, and total score, respectively, which were significantly lower than those of healthy children (86.5 ± 12.7, 83.3 ± 16.0, 92.1 ± 11.8, 87.5 ± 11.8, and 87.3 ± 10.7, all p < 0.01). Moderate and severe OI (type III/IV) patients had poorer HRQoL scores than patients with mild OI (type I). Gene mutations inducing qualitative defects in type I collagen led to worse HRQoL scores than those with quantitative defects in type I collagen, except in emotional functioning. The total HRQoL score was positively correlated with family income, lumbar, and femoral bone mineral density (BMD) Z-scores and negatively correlated with disease severity and fracture frequency. CONCLUSION: HRQoL was significantly impaired in OI patients, and patients with more severe OI had poorer HRQoL scores. For the first time, we found that children with qualitative defects in type I collagen had poorer HRQoL scores than those with quantitative defects in type I collagen.

Implementation of Quality-of-Life Assessment Increases Referrals for Intervention in Patients with Tetralogy of Fallot.

Mortality from surgical repair of tetralogy of Fallot (TOF) has decreased dramatically over the last several decades. Despite excellent surgical outcomes, studies reveal that patients with TOF continue to have decreased physical functioning, academic difficulties, and psychosocial impairments. We hypothesized that administering a validated quality-of-life assessment to patients with TOF during routine cardiology follow-up visits would help identify deficits and increase referrals to appropriate interventional programs. Between May 2017 and November 2018, TOF patients (5-20 years) and/or their families completed a standardized quality-of-life assessment (PedsQL 4.0) during cardiology clinic visits. Providers were encouraged to refer patients with abnormal PedsQL 4.0 scores to appropriate services including cardiovascular rehabilitation, psychological evaluation, neurodevelopmental testing, and school intervention. Referrals for the intervention group were compared to those of a control group using χ2 analysis. The PedsQL 4.0 was completed by 79 patients at 90 clinic visits. At least one abnormal PedsQL 4.0 score was identified in 58% (52/90) of patient encounters, and of those 52 encounters, 38% (20/52) received at least one referral for intervention. The most commonly placed referrals were for neurodevelopmental testing (16) and school intervention (11). When comparing the number of referrals from the intervention group to those of the control group, referrals to all intervention services were statistically significant (p < 0.05). Our quality improvement initiative successfully utilized a quality-of-life assessment to detect deficits and subsequently increased the number of referrals to intervention services. Future studies will address barriers that prevent completion of the PedsQL and assess how interventions impact quality-of-life scores.

Headache in children: effectiveness of multidisciplinary treatment in a tertiary paediatric headache clinic.

AIM: The aim of this article is to evaluate the effectiveness of a specific multidisciplinary treatment programme for children with headache and to describe the concept and settings of the Children's Headache Clinic in Denmark. METHOD: All new patients were included and evaluations were conducted after six and 12 months. Pharmacological and non-pharmacological treatments were offered by a team of specialists (physicians, headache nurses, a physiotherapist and a psychologist). PATIENTS: The subjects comprised 169 children (mean age 11.7 (range 4-17), 91 females, 78 males), 39% of whom suffered from chronic headache (≥15 days/month). All children were diagnosed according to the International Classification of Headache Disorders, second edition; 20% had migraine, 34% tension-type headache, 27% mixed headache, 4% medication-overuse headache, and 15% were diagnosed with other types of headaches. RESULTS: Fifty per cent of the children had an improvement in headache frequency above 50% at six months. By the use of repeated measurement analysis, we found a significant decrease in headache frequency in all of the six headache groups, whereas the increase in quality of life (PedsQL™ 4.0) was significant for the group as a whole. CONCLUSION: Though preliminary, the results show a good outcome for multidisciplinary treatment programmes for children who suffer from frequent or chronic headache.

Effects of Pilates exercises on health-related quality of life in individuals with juvenile idiopathic arthritis.

OBJECTIVE: To determine the effects of Pilates exercises on health-related quality of life (HRQOL) in individuals with juvenile idiopathic arthritis (JIA). DESIGN: Randomized, prospective, single-blind trial. SETTING: Outpatient clinic of pediatric rheumatology and the rehabilitation department. PARTICIPANTS: Children (N=50) with JIA according to the International League of Associations for Rheumatology criteria. INTERVENTIONS: Participants were randomly assigned into 2 groups. In group I (n=25), the participants were given a conventional exercise program for 6 months. Patients in group II (n=25) participated in a Pilates exercise program for 6 months. MAIN OUTCOME MEASURES: The primary outcome measure was HRQOL, as measured by the Pediatric Quality of Life Inventory version 4.0 (PedsQL 4.0). The secondary outcome measures provided an estimate of the clinical relevance of the primary outcome results and included joint pain intensity (according to a 10-cm visual analog scale), disability (according to the Childhood Health Assessment Questionnaire), joint status (using the Pediatric Escola Paulista de Medicina Range of Motion Scale), and the total PedsQL 4.0 score. RESULTS: All participants completed the study. The scores of the PedsQL 4.0 differed significantly between groups, indicating that Pilates exercises increased these scores when compared with the conventional exercise program. Group II participants showed significant improvements in the 10-cm visual analog scale-joint pain, Childhood Health Assessment Questionnaire, and Pediatric Escola Paulista de Medicina Range of Motion Scale. CONCLUSIONS: The use of Pilates exercises had a positive physical and psychosocial impact on HRQOL in individuals with JIA. Future multicenter studies with a follow-up beyond the period of treatment using more objective parameters will be useful to support the results of the present study.

Influencing Factors of Health-Related Quality of Life in Children and Adolescents with Congenital Adrenal Hyperplasia.

BACKGROUND: To investigate the influencing factors of health-related quality of life (HRQOL) in children and adolescents with congenital adrenal hyperplasia (CAH). METHODS: Pediatric Quality of Life Inventory 4.0 (PedsQL4.0) and 8-item Morisky medication adherence scale (MMAS-8) were used to survey eighty-seven children and adolescents with CAH (5-18 years), as well as their parents. SPSS 26.0 software was utilized for statistical analysis. RESULTS: The scores of social functions, school performance, social psychological function and total scores of CAH girls aged 13-18 years were lower than those of boys (p < 0.05). CAH children with older age, longer course of disease, older than 3 years old at first diagnosis, living in rural areas, lower education level of caregivers and lower family monthly income had lower scores. CAH patients with poor compliance and complications had significantly lower scores in each single domain, social psychological function, and total scores than those with good compliance and no complications (p < 0.05). CONCLUSIONS: Age, age at initial diagnosis, course of disease, complications, compliance, residence, education level of caregivers and family income were important factors affecting HRQOL of CAH children and adolescents, among which complications and compliance were independent key influencing factors.

Decreased health-related quality of life in children and adolescents with autoimmune hepatitis.

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 0.16mg/kg/day at the time of the interview showed significantly higher physical scores than those who received a dose similar to or above 0.16mg/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.

Is obesity associated with decreased health-related quality of life in school-age children?-Results from a survey in Vietnam.

BACKGROUND: Overweight and obesity have short-term and long-term effects on children's physical and mental health. These conditions currently have a tendency to increase among Vietnamese school children. AIMS: This study aimed to assess the quality of life among 8-10 year-old children in Vietnam. METHODS: This cross-sectional study was conducted with a sample of 264 children aged 8-10 years (including 88 obese children and 176 normal-weight ones) at two primary schools in Hanoi, Vietnam, in 2018 and their mothers or fathers participated in this study. The Vietnamese version of the Pediatric Quality of Life Inventory (PedsQL) 4.0 generic score scales were used to collect information from children and their parents about the children's quality-of-life. Mean and standard deviation of PedsQL scores were calculated. Independent t-test was used to compare mean scores between normal-weight and obese children. RESULTS: Both child self reports and parent-proxy reports revealed that obese children had significantly lower scores for the total scales compared to normal weight children (80.7 versus 84.0; p < 0.05 for proxy reports and 77.6 vs 84.6; p < 0.001 for self reports). Total scale and subscale scores reported by parents were lower compared to those reported by children. Besides, 79% of normal weight children reported having PedsQL total scores in the highest quartile (≥75%), compared to 56.8 % of obese children (p = 0.01). Similarly, these proportions for parent-proxy reports were 79.5% and 65.9%, respectively (p < 0.05). Emotional scores were both found the lowest among the four subscales (71.6 for child self reports and 73.1 for parent-proxy reports). RECOMMENDATIONS: Interventions aimed to improve quality of life of overweight and obese children in Vietnam should not focus only on diet adjustment and physical exercise but need to address all dimensions of health-related quality of life, especially emotional, social and school functioning.

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

INTRODUCTION: The aim of this study was to validate the PedsQL 4.0™ in Colombian children and adolescents using the Rasch model. The Paediatric Quality of Life Inventory (PedsQL 4.0™) 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 4.0™ was 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.

Health-related quality of life in pediatric Chiari Type I malformation: the Chiari Health Index for Pediatrics.

OBJECT The purpose of this study was to design and validate a patient-reported health-related quality of life (HRQOL) instrument for pediatric Chiari Type I malformation (CM-I), the Chiari Health Index for Pediatrics (CHIP). METHODS The CHIP has 45 items with 4 components making up 2 domain scores, physical (pain frequency, pain severity, nonpain symptoms) and psychosocial; physical and psychosocial scores are combined to create an overall HRQOL score. Increasing scores (0 to 1) represent increasing HRQOL. Fifty-five patients with CM-I (mean age 12 ± 4 years, 53% male) were enrolled and completed the CHIP and Health Utilities Index Mark 3 (HUI3). Twenty-five healthy controls (mean age 11.9 ± 4 years, 40% male) also completed the CHIP. CHIP scores were compared between these groups via the Mann-Whitney U-test. For CHIP discriminative function, subscore versus presence of CM-I was compared via receiver operating characteristic curve analysis. CHIP scores in the CM-I group were stratified by symptomatology (asymptomatic, headaches, and paresthesias) and compared via Kruskal-Wallis test with Mann-Whitney U-test with Bonferroni correction (p < 0.0167). CHIP was compared with HUI3 (Health Utilities Index Mark 3) via univariate and multivariate linear regression. RESULTS CHIP physical and psychosocial subscores were, respectively, 24% and 18% lower in CM-I patients than in controls (p < 0.001); the overall HRQOL score was 23% lower as well (p < 0.001). The area under the curve (AUC) for CHIP physical subscore versus presence of CM-I was 0.809. CHIP physical subscore varied significantly with symptomatology (p = 0.001) and HUI3 pain-related quality of life (R(2) = 0.311, p < 0.001). The AUC for CHIP psychosocial subscore versus presence of CM-I was 0.754. CHIP psychosocial subscore varied significantly with HUI3 cognitive- (R(2) = 0.324, p < 0.001) and emotion-related (R(2) = 0.155, p = 0.003) quality of life. The AUC for CHIP HRQOL versus presence of CM-I was 0.820. Overall CHIP HRQOL score varied significantly with symptomatology (p = 0.001) and HUI3 multiattribute composite HRQOL score (R(2) = 0.440, p < 0.001). CONCLUSIONS The CHIP is a patient-reported, CM-I-specific HRQOL instrument, with construct validity in assessing pain-, cognitive-, and emotion-related quality of life, as well as symptomatic features unique to CM-I. It holds promise as a discriminative HRQOL index in CM-I outcomes assessment.

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.

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