Families’ Perceptions of the Motor Development and Quality of Life of Their Children Aged 0–3 Years during Home Confinement Due to the COVID-19 Pandemic. A Descriptive Study

The child’s interaction with the natural environment allows different learning opportunities and favors their motor development, which may be affected after a period of environmental deprivation, a consequence of home confinement due to the COVID-19 pandemic. The main objective of the study was to analyze the different areas of motor development, as well as the quality of life of children aged 0 to 3 years old after home confinement by COVID-19 and the possible correlation between both variables, and the influence of parental stimulation on motor development during this time of exclusive interaction with the immediate environment (home and family). A descriptive study was performed. A simple and anonymous questionnaire was created for parents of children between 0 and 3 years old who lived in Spain during the period of home confinement due to COVID-19 (March to June 2020). The measurement instrument used was a questionnaire made in “Google Forms”, where the variables were collected: Motor development (measured through the Ages & Stages Questionnaire, ASQ3), Quality of life (assessed with the Pediatric Quality of Life Inventory, PedsQL) and other variables, such as stimulation, performed during home confinement. Eighty-eight questionnaires were validated. The highest score in the motor development domains were obtained in children 2–3 years old. The motor domain of children aged 2–3 years old that obtained the highest score was communication (M = 54.69 ± 10.03) and the highest score in the quality of life was obtained in children aged 0–1 years old (M = 85.47 ± 12.39), also acquiring the lowest score in the emotional domain in all age groups (0–1, 1–2 and 2–3 years old). The assessment of motor development and quality of life after home confinement due to the COVID-19 pandemic did not determine low values, so it would not have been affected during this period of lack of interaction with the natural environment. Emphasizing that the emotional aspect within quality of life was the lowest score, this indicates that children from 0 to 3 years old need more emotional support in situations of variability of daily routines and of family stress.

Adaptation and validation of two autism-related measures of skills and quality of life in Ethiopia

Although most children with autism and other neurodevelopmental disorders live in low- and middle-income countries, assessment tools are lacking in these settings. This study aims to culturally adapt and validate two questionnaires for use in Ethiopia: the Autism Treatment Evaluation Checklist and the Pediatric Quality of Life Inventory™ Family Impact Module. Both questionnaires were adapted to be suitable for administration in low-literate caregivers and translated using the backward translation procedure. The factor structure, reliability and validity were investigated using caregiver-reports on 300 children with neurodevelopmental disorders or physical health conditions. Confirmatory factor analysis of the Pediatric Quality of Life Inventory™ Family Impact Module data indicated an acceptable fit of the hypothesised eight-factor structure. Internal consistency was high for both measures. Test–retest reliability was excellent for the Autism Treatment Evaluation Checklist and moderate to excellent for the Pediatric Quality of Life Inventory™ Family Impact Module. Both questionnaires demonstrated adequate known-group validity, with moderate to very large effect size group differences between case and control groups. The questionnaires correlated moderately with each other. In conclusion, the Ethiopian adaptations of the Autism Treatment Evaluation Checklist and the Pediatric Quality of Life Inventory™ Family Impact Module are valid and reliable tools for use in parents of children with neurodevelopmental disorders including autism. These adapted measures may also be valuable for use in other low-income settings. Lay abstract Although most children with autism and other neurodevelopmental disorders live in low- and middle-income countries, reliable tools to assess these conditions are often not available in these settings. In this study, we adapted two questionnaires developed in Western high-income contexts for use in Ethiopia – the Autism Treatment Evaluation Checklist and the Pediatric Quality of Life Inventory™ Family Impact Module. Both measures are completed by a child’s caregiver and both are relatively short and easy to complete. The Autism Treatment Evaluation Checklist is used to monitor the developmental issues of the child, while the Pediatric Quality of Life Inventory™ Family Impact Module measures the impact of the child’s condition on the caregiver. We translated both tools into the Ethiopian language Amharic, and adapted them to the local cultural context. Three hundred caregivers, half of whom were parents of children with neurodevelopmental disorders, and half were parents of children with physical health problems, completed the questionnaires through a face-to face interview, so that non-literate caregivers could also take part. Both tools performed adequately, measured what we aimed to measure and were reliable. Both the Autism Treatment Evaluation Checklist and Pediatric Quality of Life Inventory™ are suitable tools to assess children with developmental and other health problems in Ethiopia and their caregivers. We believe that more similar tools should be developed or adapted for use in low-income countries like Ethiopia, to gain a better understanding of developmental problems in those settings, and allowing clinicians and service providers to use these tools in their practice. Moreover, these tools can be used in future studies to evaluate interventions to improve support for families.

IMPACT OF THE QUALITY OF SPACE OF LEARNING ENVIRONMENT ON THE QUALITY OF LIFE OF AUTISTIC CHILDREN : Insights from three selected schools form Kandy, Sri Lanka

Children with Autism Spectrum disorder (ASD)are found to struggle with diverse challenges in achieving quality of life in their education environments. In view of this the current investigation looked in to the impact of the quality of space in their learning environments in enhancing the Quality of life of Autistic children. Two types of school environments that accommodate students with ASD were examined namely, a special education school (A) and two mainstream schools with special educational units (B & C) in Kandy, considering 10 participants from each school (n=30). Inclusive design parameters were examined by a photographic survey and observations by the investigator and recorded via a 5-point Likert scale based on their level of presence. Pediatric Quality of Life Inventory (PedQL) was adopted to measure quality of life of participants. School A demonstrated the highest averages of for quality of space (65%) as well as quality of life ( 61.7%) while C ( 34%/48.3%) and B ( 30%/44.7%) showed lower averages respectively. Accordingly, the study observed a clear relationship between the Quality of Space and the Quality of Life of children with ASD, highlighting the potential of enhancing the quality of life of the students with ASD by improving the quality of space of local schools.

Sex differences in children's health status as measured by the Pediatric Quality of Life Inventory (PedsQL)™: cross-sectional findings from a large school-based sample in the Netherlands

Background Previous research has shown that female adolescents and adults report lower health status than their male peers. Possibly, this discrepancy already develops during childhood. We collected sex-specific data with the Pediatric Quality of Life Inventory (PedsQL) in a large school-based sample. Methods The online version of the PedsQL was administered to healthy Dutch children aged 5–7 years (parent proxy-report), 8–12 years (parent proxy-report and child self-report), and 13–17 years (parent proxy-report and child self-report), recruited through regular primary and secondary schools. Sex differences were assessed using t-tests or Mann–Whitney U-tests. Wilcoxon signed-rank tests and intraclass correlation coefficients served to compare parent proxy-reports with child self-reports. Multivariable linear regression analyses were used to assess the associations of sex of the child, age, and parental educational level with PedsQL scores. Results Eight hundred eighty-two parents and five hundred eighty one children were recruited from 15 different schools in the Netherlands. Parents of 8-to-12-year-olds reported higher scores on School Functioning for girls than for boys (mean difference [MD]: 6.56, p < 0.001). Parents of 13-to-17-year-olds reported lower scores on Physical and Emotional Functioning for girls than for boys (MDs: 2.14 and 5.79, p = 0.014 and p < 0.001, respectively). Girls aged 8–12 years reported lower scores than boys in this age group on Physical Functioning (MD: 3.09, p = 0.005). Girls aged 13–17 years reported lower scores than boys in this age group on Physical Functioning (MD: 3.67, p < 0.001), Emotional Functioning (MD: 8.11, p < 0.001), and the Total Score (MD 3.26, p = 0.004). No sex differences were found in children aged 5–7 years. Agreement between child self-reports and parent proxy-reports was poor to moderate. Conclusions Girls generally had lower PedsQL scores than boys, both in parent proxy-reports and in child self-reports. We recommend to apply sex-specific data when assessing health status using the PedsQL.

Determinants of impairments in functioning, fatigue and participation ability in pediatric brain tumor survivors

Introduction Pediatric brain tumor survivors (PBTS) experience disease- and treatment-related sequelae. We aimed to investigate the occurrence of participation limitations, impairments in functioning, fatigue, and the association between patient, tumor- and treatment-related factors and these outcomes. Methods Children (4-18 years) after treatment for a brain tumor between 2005-2014 at the Erasmus Medical Center, Rotterdam, the Netherlands, were eligible. The parent-reported Child and Family Follow-up Survey developed to measure participation and impairments in functioning in youth with acquired brain injury, was used. Fatigue was assessed using the Pediatric Quality of Life Inventory Multidimensional Fatigue Scale. Associations with patient, tumor- and treatment-related factors were explored using univariable analyses. Results Ninety-one PBTS (median age: 11.3 years [range: 9.5-14.1], time since treatment: 3.9 years [range: 4-6.2]) were included (response rate: 55%). Participation limitations were reported in 53% and were associated with impairments in functioning (15-67%) (p≤0.01) and fatigue (p≤0.03). Parent- and child-reported fatigue was increased compared to normative values (p=≤0.02). History of hydrocephalus was associated with increased fatigue (p≤0.04). Younger age at diagnosis and longer time since diagnosis were associated with impairments in functioning and cognitive fatigue (p=&lt;0.05). Participation limitations, impairments in functioning and fatigue were similar in PBTS who were &lt;3 or ≥3 years since completion of treatment. Conclusion More than half of PBTS reported limited participation ability, which is associated with impairments in functioning and fatigue. The complication hydrocephalus seems to lead to more fatigue. Participation limitations, impairments in functioning and fatigue appear not to diminish in the longer term.

The Quality of Life of Children with Myelomeningocele: A Cross-Sectional Preliminary Study

Objectives: To investigate the relationship between the defects and symptoms caused by myelomeningocele (MMC) and quality of life. Design: A cross-sectional questionnaire survey. Methods: The subjects were 52 parents of children with MMC. Structured questionnaires were used: the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQLTM 4.0) and a Study-Specific Questionnaire (SSQ). Results: The overall PedsQLTM 4.0 score was 56.4 (SD ± 14.7). A strong, significant negative correlation was found between the children’s age and emotional functioning. Functioning in this area deteriorated with age by a mean of 1.5 points per year of age. Children with no hydrocephalus functioned significantly better than those with this defect in the physical, social, and school areas (p < 0.05). Foot deformities significantly (p = 0.033) adversely affected the children’s physical functioning. Living in a single-parent family had no statistically significant impact on functioning in any of the areas analyzed (p > 0.05). Conclusion: Understanding the QoL of children with MMC and identifying its determinants may help in planning interventions to minimize the adverse impact of the illness.

Perceived Listening Difficulty in the Classroom, Not Measured Noise Levels, Is Associated With Fatigue in Children With and Without Hearing Loss

Purpose The purpose of this study was to examine if classroom noise levels and perceived listening difficulty were related to fatigue reported by children with and without hearing loss. Method Measures of classroom noise and reports of classroom listening difficulty were obtained from 79 children (ages 6–12 years) at two time points on two different school days. Forty-four children had mild to moderately severe hearing loss in at least one ear. Multiple regression analyses were conducted to evaluate if measured noise levels, perceived listening difficulty, hearing status, language abilities, or grade level would predict self-reported fatigue ratings measured using the Pediatric Quality of Life Inventory Multidimensional Fatigue Scale. Results Higher perceived listening difficulty was the only predictor variable that was associated with greater self-reported fatigue. Conclusions Measured classroom noise levels showed no systematic relationship with fatigue ratings, suggesting that actual classroom noise levels do not contribute to increased reports of subjective fatigue. Instead, perceived challenges with listening appears to be an important factor for consideration in future work examining listening-related fatigue in children with and without hearing loss.

Quality of life and emotional vulnerability in a national cohort of adolescents living with Fontan circulation

Introduction: To investigate quality of life and mental health after Fontan completion, we aimed to characterise outcomes in a representative group of adolescent patients. The study was part of the pre-transition clinical work-up in adolescents with Fontan-type palliation of univentricular CHD. The programme covers the entire paediatric Fontan patient population in Norway. Methods: Our cross-sectional study included 42 adolescents with Fontan circulation aged 15–18. We recruited a control group of 29 healthy peers. Quality of life was measured by the Pediatric Quality of Life Inventory Questionnaire, while mental health was assessed with the Strength and Difficulties Questionnaire. Results: Fontan patients scored lower than healthy controls on the Pediatric Quality of Life Inventory total (p = 0.004), the physical (p < 0.001) and social (p = 0.001) functioning subscale, and the Strength and Difficulties Questionnaire subscale of emotional symptoms (p = 0.035). Compared to two of the healthy teens (7%), seven patients (16%) in the Fontan group scored as having impaired mental health (p = 0.224). The female/male ratio for individuals with impaired health was 7:2 (p = 0.003). Conclusions: Compared to healthy controls, adolescents after Fontan-type palliation in Norway have good health-related quality of life and mental health, despite having slightly lower score than healthy individuals, mainly in physical domains and school functioning. Compared to healthy controls and healthy teenagers, these adolescents have somewhat more emotional problems, and compared to male patients, female patients more often have impaired mental health.