Health-related Quality Of Life In Children Research Articles

Parenting Stress over the First Year of Inflammatory Bowel Disease Diagnosis.

A diagnosis of inflammatory bowel disease (IBD) in children can disrupt the family, including altered routines and increased medical responsibilities. This may increase parenting stress; however, little is known about parenting stress changes over the first year following an IBD diagnosis, including what demographic, disease, or psychosocial factors may be associated with parenting stress over time. Fifty-three caregivers of children newly diagnosed with IBD (Mage = 14.17 years; Mdays since diagnosis = 26.15) completed parenting stress (Pediatric Inventory for Parents), child anxiety (Screen for Child Anxiety-Related Disorders), and child health-related quality of life (HRQOL; IMPACT) measures within 1 month of diagnosis and 6-month and 1-year follow-ups. Multilevel longitudinal models assessed change and predictors of parenting stress. Parenting stress was significantly associated with greater child anxiety and lower HRQOL at diagnosis (rs = 0.27 to -0.53). Caregivers of color and caregivers of female youth reported higher parenting stress at diagnosis (ts = 2.02-3.01). Significant variability and declines in parenting stress were observed across time (ts = -2.28 and -3.50). In final models, caregiver race/ethnicity and child HRQOL were significantly related to parenting stress over the first year of diagnosis (ts = -2.98 and -5.97). Caregivers' parenting stress decreases across 1 year of diagnosis. However, caregivers of color and those rating their child's HRQOL as lower may be at risk for greater parenting stress. More research is needed to understand why caregivers of color reported greater parenting stress compared to White caregivers. Results highlight the importance of providing whole-family care when a child is diagnosed with IBD.

Osteochondromatosis: clinical variability and factors related to quality of life in children and adults.

Hereditary osteochondromatosis is an uncommon, autosomal, dominant condition characterized by the presence of multiple bone growths. To analyze factors associated with health-related quality of life (HRQoL) among children > 2 years and adults receiving follow-up at a tertiary care children's hospital in Argentina. Cross-sectional study of a follow-up cohort. HRQoL was measured using the Pediatric Quality of Life Inventory® (PedsQL) and the Short Form Health Survey (SF- 36). Sex, age, sociodemographic characteristics, height, radiology, axis alteration and limb function, presence of pain, and malignant change were recorded. Severity was classified as per Pedrini et al. Parametric and non-parametric tests and regression analysis were done. A total of 66 cases (47 children and 19 adults) were included. Male/female ratio: 1.7/1. Median age: 13.4 years (r: 2.21-55.3). Pain was observed in 30/47 children and in 17/19 adults. Considering the adult bone age (or epiphyseal closure) as the cutoff point to define adult status, 11/37 children and 18/27 adults had a severe disease and 2/38 children and 9/27 adults had short stature. The average value of the physical component of HRQoL in children was 65.9 (SD: 22.5) and, in adults, 27.2 (IQR: 18.5- 34.7). The presence of pain and clinical severity were significantly associated with a lower HRQoL, both in children and adults. This study found that pain and disease severity had a negative effect on HRQoL.

Health-related quality of life in children and adolescents in remission after antineoplastic treatment: a systematic review

Purpose: The aim of this systematic review was to evaluate available evidence on the effect of childhood cancer and its treatment on survivors' health-related quality of life (HRQoL). Methods: MEDLINE, EMBASE, the Cochrane Oral Health Group's Trials Register, CENTRAL database and unpublished literature on ClinicalTrials.gov, the National Research Register, and Pro-Quest Dissertation Abstracts and Thesis databases were searched for studies, up to April 2021, reporting on HRQoL of children and adolescents in remission after antineoplastic treatment. No language or publication date restrictions were applied. Data extraction and risk of bias assessment, using the Newcastle-Ottawa scale were performed and overall quality of life was reported. Scores for specific domains were recorded along with disease- and treatment-related determinants of poor HRQoL. Results: In all, 20 cross-sectional studies including 3119 patients (aged 4-17 years) who were in remission were identified in the literature search. Quality of included studies ranged from good to excellent. Findings were contradictory, with some studies reporting a similar or even better HRQoL for survivors compared to healthy controls, and others reporting diminished values. Physical and psychosocial functioning were the domains mostly affected, followed by social functioning. Determinants of poor HRQoL were female gender, central nervous system tumors, combination of treatment modalities, and severity of late effects. Conclusion: Cancer survivors are affected by the disease and its treatment to some extent but they seem to perform well overall.

0484 Trouble Sleeping Predicts Future Decreased Quality of Life in Young Children with Fontan Circulation

Abstract Introduction Children with congenital heart disease who undergo a Fontan procedure are at higher risk of reduced health-related quality of life (HR-QOL) compared to age-matched peers. We have previously shown that current sleep disturbances are associated with decreased HR-QOL, but there is no existing longitudinal data on the relationship between sleep disturbance and HR-QOL in children with Fontan circulation. Methods We analyzed data from the Pediatric Heart Network Single Ventricle Reconstruction follow up study to evaluate associations between parent-reported trouble sleeping with HR-QOL as measured by the child health questionnaire (CHQ, measured at age 6 years) as well as the Pediatric Quality of Life questionnaire (PedsQL, measured at baseline as well as age 4, 5 and 6 years) in children with Fontan circulation. Presence of trouble sleeping was assessed at baseline and quality of life was assessed at baseline (age 3 years old) and annually for 3 years. Analysis was performed using the Wilcoxon sum rank test. Results 227 participants had data at baseline (age 3 years), and 196 participants completed HR-QOL measures at all time points. Parent-reported trouble sleeping was reported “often” or “almost always” in 11% of participants. Baseline trouble sleeping predicted decreased HR-QOL at all future time points, particularly psychosocial HR-QOL. Psychosocial HR-QOL as measured by the Peds QL was significantly lower at all time points in the group with trouble sleeping. At age 6 years, psychosocial HR-QOL remained significantly lower in the group with trouble sleeping at baseline on both the PedsQL (median score 78 [interquartile range 63, 90] vs 65 [58, 83], p=0.03) and the CHQ (median t-score 54 [47, 59] vs 47 [42, 53], p=0.002). Conclusion Trouble sleeping in children with Fontan circulation predicts future decreased HR-QOL. Better understanding of sleep problems is needed in children with Fontan circulation as sleep disorder treatment may lead to improved HR-QOL in this at-risk population. Support (If Any) Funding to DC from the American Heart Association and NIH-NHLBI. Single Ventricle Reconstruction study data obtained from the Pediatric Heart Network.

Increased carotid intima-media thickness and reduced health-related physical fitness in children and adolescents with coarctation of the aorta

BackgroundCoarctation of the Aorta (CoA) was assumed to be one of the congenital heart defects not associated with major long-term sequels. Meanwhile, it is known that there are long-term cardiovascular consequences. This study investigates the functional outcome measures in children with CoA. Methods77 children (40.3% girls, 13.1 ± 3.3 years) with CoA were examined for their functional outcome measures and compared to healthy controls (CG). Carotid Intima-Media wall thickness (cIMT) was measured by ultrasound of the common carotid artery. In addition, Health-related Physical Fitness (HrPF) was assessed by five tasks of the FITNESSGRAM® and health-related quality of life (HrQoL) was analyzed with a self-report questionnaire (KINDL-R). ResultsAfter adjustment for age and sex and in comparison to the CG, the CoA patients showed structural changes in cIMT (CoA: 0.480 ± 0.043 mm vs CG: 0.465 ± 0.033 mm; p = 0.002) and significantly lower HrPF (z-score −0.46 ± 0.7; p < 0.001; 32nd percentile). HrQoL in children with CoA was significantly better in comparison to CG (p = 0.020). ConclusionEarly onset of structural changes of the cIMT in children with CoA could be shown. These structural changes in combination with hypertension, which often is associated with CoA, should be the focus of structured follow-up during childhood. The children with CoA showed impaired HrPF in comparison, where the promotion of physical activity should be the key factor for improvement. Encouragingly they showed better HrQoL.

Caregiver burden, and parents' perception of disease severity determine health-related quality of life in paediatric patients with intoxication-type inborn errors of metabolism

BackgroundLiving with a non-acute (phenylketonuria) or acute (e.g. urea cycle disorders, organic acidurias) intoxication-type inborn error of metabolism (IT-IEM) can have a substantial impact on health-related quality of life (HrQoL) of paediatric patients and their families. Parents take primary responsibility for treatment monitoring and experience worry and fear about their child's health status. Quantitative evidence on parental psychological factors which may influence the HrQoL of patients with IT-IEM are sparse to non-existent. MethodsIn this multicenter survey study 50 parents of IT-IEM patients (ages 5–19) assessed the severity of their child's disease, reported on caregiver burden, and proxy-rated their child's HrQoL. Additionally, 35 patient self-reports on HrQoL were obtained (n = 16 female patients, n = 19 male patients). Multiple linear regressions were conducted to examine the predictive power of child age, sex, medical diagnosis type (acute / non-acute), parental perceived disease severity and caregiver burden on patients' HrQoL. Mediation analyses were used to investigate the relation of caregiver burden and parental ratings of disease severity with patients' HrQoL. ResultsSignificant regression models for self-reported [F(5,34) = 10.752, p < .001, R2 adj.. = 0.59] and parent proxy reported HrQoL [F(5,49) = 20.513, p < .001, R2 adj.. = 0.67] emerged. High caregiver burden and perceived disease severity predicted significantly lower patient self- and proxy-reported HrQoL while type of diagnosis (acute versus non-acute) did not. Female sex predicted significantly lower self-reported HrQoL. High caregiver burden was the mediating factor between high perceived severity of the child's disease and lower proxy- by parent rated HrQoL. ConclusionDetecting elevated burden of care and providing support for parents seems crucial to prevent adverse consequences for their children's HrQoL. Intervention studies are needed, to assess which support programs are most efficient.

Health-Related Quality of Life of Colombian children and adolescents with mild Traumatic Brain Injury

Little is known about the impact of mild traumatic brain injury (TBI) on the functioning of children in Latin America, especially regarding a broad construct called health-related quality of life (HRQoL). The objective of this study was to explore the effects of mild TBI on the HRQoL of Colombian children and adolescents, considering possible cognitive and behavioral sequelae derived from TBI. A case-control study was conducted in which 30 children and adolescents with mild TBI and their parents and a group of 30 healthy subjects participated. The results show that participants with mild TBI have an HRQoL similar to the general population of the same age and sex. They report a lower HRQoL than their parents in the Autonomy and Parents dimension. At the cognitive level, the group with mild TBI has a lower processing speed and less work done in selective and sustained attention tasks; at the behavioral level, they exhibit more symptoms of anxiety, depression, withdrawal and social problems.

Disease burden in patients with severe hand, foot, and mouth disease in Jiangsu Province: a cross-sectional study

ABSTRACT This study aimed to estimate the disease burden and health-related quality of life (HRQOL) among patients with severe hand, foot, and mouth disease (HFMD) in Jiangsu Province, China. We analyzed the surveillance data of HFMD cases in Jiangsu Province from 2009 to 2020. Moreover, a cross-sectional study was conducted in Nanjing and Suzhou, China, between January 2017 and May 2018. Patients with severe HFMD and their parents were recruited from selected hospitals. Questionnaires and hospital management systems were used to collect data on direct economic burden. The HRQOL of children was assessed using the TNO-AZL Preschool Quality of Life (TAPQOL) scale. A total of 1,348,737 confirmed cases of HFMD were reported to the NNDRS in Jiangsu province during 2009–2020. Of these, 9,622 were severe cases, with 62 (.64%) of these being fatal. From January 2017 to May 2018, data was collected from 362 severe HFMD cases using a structured questionnaire. The median per capita direct economic burden was RMB 16142.88, and was associated with the region and length of hospital stay (P < .05). The direct economic burden for all cases of severe HFMD in Jiangsu province between 2017 and 2018 was approximately RMB 16.64 million. Finally, the median (IQR) of the TAPQOL scale for children with severe HFMD was 69.23 (56.20, 82.27). Severe HFMD infection is a relatively large burden for individuals, and the burden of EV-A71 infection was seen to be even greater for the population. Prevention of severe HFMD should strengthen hygiene habits and targeted measures for EV-A71 vaccination.

Usefulness of the SF-36 Health Survey questionnaire in screening for health-related quality of life among parents of children with cancer: Latent profile analysis.

SummaryBackgroundPoor health-related quality of life (HRQOL) of parents of children with cancer as their main caregivers can adversely affect child’s HRQOL. Short Form-36 Health Survey (SF-36) is a widely used instrument to measure HRQOL. However, there are no clearly defined cut-off points for screening for parents with poor HRQOL. This study aimed to find appropriate cut-off points for the SF-36 questionnaire in a sample of parents of children with cancer using latent profile analysis to add another possibility to use it.MethodsIn this cross-sectional study, a number of 108 couples (108 mothers and 108 fathers), who had children with cancer, were selected by simple random sampling method from the patients’ files. The study was conducted at two settings, pediatric hematology/oncology wards of BESAT hospital (a hospital related to Hamadan University of Medical Sciences, Iran) in 2017. Latent Profile analysis (LPA) method was used to determine appropriate cut-off points for the SF-36 questionnaire. Data was analyzed by Mplus and R3.3.0 software.ResultsBased on the results, scores ≤ 44, 45-63 and ≥ 64 for mental health, and scores ≤ 43, 44-59 and ≥ 60 for physical health classes indicate weak, medium, and good, respectively. These cut-off points showed acceptable accuracy in classification of individuals. For the total quality of life, correct classification rates were 88%, 65% and 53% for each class respectively. For mental health (physical health), they were 79(63), 50(62) and 52(63) for each class respectively.ConclusionsThe cut-off points for the classes identified here can be useful in screening parents of children with cancer in clinical setting to provide clinical interventions to protect vulnerable parents from negative outcomes.

Bronchiectasis - Exercise as Therapy (BREATH): rationale and study protocol for a multi-center randomized controlled trial

BackgroundGlobally, bronchiectasis (BE) unrelated to cystic fibrosis (CF) is recognized as a major cause of respiratory morbidity, mortality, and healthcare utilization. Children with BE regularly experience exacerbations of their condition resulting in frequent hospitalizations and decreased health-related quality of life (HR-QoL). Guidelines for the treatment and management of BE call for regular exercise as a means of improving aerobic fitness and HR-QoL. Moreover, research in adults with BE has shown that exercise can reduce the frequency of exacerbations, a potent predictor of future lung function decline and respiratory morbidity. Yet, to date, the health benefits resulting from therapeutic exercise have not been investigated in children with BE. The BREATH, Bronchiectasis - Exercise as Therapy, trial will test the efficacy of a novel 8-week, play-based therapeutic exercise program to reduce the frequency of acute exacerbations over 12 months in children with BE (aged ≥ 4 and < 13 years). Secondary aims are to determine the cost-effectiveness of the intervention and assess the program’s impact on aerobic fitness, fundamental movement skill (FMS) proficiency, habitual physical activity, HR-QoL, and lung function.MethodsThis multi-center, observer-blinded, parallel-group (1:1 allocation), randomized controlled trial (RCT) will be conducted at three sites. One hundred and seventy-four children ≥ 4 and < 13 years of age with BE will be randomized to a developmentally appropriate, play-based therapeutic exercise program (eight, 60-min weekly sessions, supplemented by a home-based program) or usual care. After completing the baseline assessments, the number of exacerbations and secondary outcomes will be assessed immediately post-intervention, after 6 months of follow-up, and after 12 months of follow-up. Monthly, parental contact and medical review will document acute respiratory exacerbations and parameters for cost-effectiveness outcomes.DiscussionThe BREATH trial is the first fully powered RCT to test the effects of a therapeutic exercise on exacerbation frequency, fitness, movement competence, and HR-QoL in children with bronchiectasis. By implementing a developmentally appropriate, play-based exercise program tailored to the individual needs of children with bronchiectasis, the results have the potential for a major paradigm shift in the way in which therapeutic exercise is prescribed and implemented in children with chronic respiratory conditions. The exercise program can be readily translated. It does not require expensive equipment and can be delivered in a variety of settings, including the participant’s home. The program has strong potential for translation to other pediatric patient groups with similar needs for exercise therapy, including those with obesity, childhood cancers, and neurological conditions such as cerebral palsy.Trial registrationAustralian and New Zealand Clinical Trials Register (ANZCTR) ACTRN12619001008112

Quality of Life in Children and Adolescents with Gastroesophageal Reflux Disease

Objective: Children with gastroesophageal reflux disease (GERD) have significant co-morbidity. This study aimed to evaluate the health-related quality of life (HRQoL) in these children and adolescents by self and parent questionnaires. In addition, we also investigated the impact of gastroesophageal reflux symptoms on HRQoL. Material and Methods: The study included 93 patients with GERD and 59 age and sex-matched healthy controls. We asked the children and their parents to complete the validated Turkish version of KINDer Lebensqualitätsfragebogen-Children Quality of Life Questionnaire (self-report and parent report, respectively) for assessing HRQoL. The patients have additionally completed a gastroesophageal reflux symptom questionnaire. Results: The patients and their parents scored significantly lower on the general health perception (p=0.004) than the healthy controls. Especially physical well-being and emotional well-being subscales were negatively affected (p=0.000, and p=0.002, respectively). The most common symptoms in the patients were epigastric pain (70.9%), abdominal distention (64.5%), halitosis (58%), and regurgitation (50.6%). Epigastric pain significantly negatively affected the total HRQoL score in the patients (p= 0.003). The patients with GERD scored significantly higher than their parents in physical well-being (p=0.000) and family (p=0.000) subscale scores. The patients with GERD evaluated their quality of life more negatively in self-esteem (p=0.000) and school domains (p=0.001) than did their parents. Conclusion: GERD has a significant negative impact on HRQoL in children. The most affected domains are physical well-being and emotional well-being. Epigastric pain is associated with worse HRQoL scores.

Functional and environmental predictors of health-related quality of life of school-age children with cerebral palsy: A cross-sectional study of caregiver perspectives.

Caregivers' reports often serve as a decision-making guide in the treatment and rehabilitation of children with cerebral palsy (CP). This study identified predictors of the caregiver-reported health-related quality of life (HRQoL) of school-age children with CP. A cross-sectional study was conducted using the convenience sample of 108 children with CP (60 males; aged 7-18 years; mean age 12 years 8 months [SD 3 years 5 months]). Caregivers reported their child's HRQoL using KIDSCREEN-27. Standard multiple regression analyses were conducted to test if the child characteristics (gender, age, Gross Motor Function Classification System-Expanded & Revised [GMFCS-E&R], Manual Ability Classification System [MACS], intellectual disability, health problems, communication, social skills, behavioural difficulties); family characteristics (income, type, home adaptation); physical, social and attitudinal barriers; environmental features; and family-centeredness of service delivery significantly predicted HRQoL. Fine manual abilities, home adaptation and the magnitude of barriers predicted physical well-being. The child's challenging behaviour, the magnitude of barriers and the barriers related to different policies predicted psychological well-being. The home adaptation level and provision of general information about the child's disability and available types of services predicted HRQoL domain related to interactions and relationships with parents. Children with behavioural difficulties and more severe limitations in communication had less social support from friends and peers. The social skills and intellectual functioning combined with the parental ratings of the child's behaviour, other people's attitudes towards the child and the lack of support predicted HRQoL in the School Environment domain. The magnitude and frequency of barriers were the strongest predictors of general HRQoL. From the caregivers' perspective, home adaptation, supportive laws and policies and family-centred rehabilitation care that meets the family needs may promote children's HRQoL. Specific interventions addressing modifiable environmental features and continuous support to children in improving their fine motor abilities, communication and social skills and families in managing behavioural difficulties may be relevant for HRQoL of school-age children with CP.

Measurement properties of the EQ-5D-Y administered through a smartphone app in children with asthma: a longitudinal questionnaire study

BackgroundAsthma impacts children’s physical, emotional, and psychosocial Health-Related Quality of Life (HRQL). The EQ-5D-Y is a generic econometric instrument developed to measure HRQL in children.ObjectiveEvaluation of feasibility, validity, reliability, and responsiveness of EQ-5D-Y descriptive system and utility index to allow the assessment of HRQL in children with asthma, aged 8–11 years (self-response version) or under 8 years old (proxy-response version).MethodsWe used data from baseline to 10 months of follow-up of an observational, prospective study of children with persistent asthma recruited by pediatricians in Spain (2018–2020). HRQL instruments were administered through a smartphone application: ARCA app. The EQ-5D-Y is composed of a 5-dimension descriptive system, a utility index ranging from 1 to − 0.5392, and a general health visual analogue scale (EQ-VAS). The Pediatric Asthma Impact Scale (PROMIS-PAIS) includes 8 items, providing a raw score. Construct validity hypotheses were stated a priori, and evaluated following two approaches, multitrait–multimethod matrix and known groups’ comparisons. Reliability and responsiveness subsamples were defined by stability or change in EQ-VAS and the Asthma Control Questionnaire (ACQ), to estimate the intraclass correlation coefficient (ICC) and the magnitude of change over time.ResultsThe EQ-5D-Y was completed at baseline for 119 children (81 self-responded and 38 through proxy response), with a mean age of 9.1 (1.7) years. Mean (SD) of the EQ-5D-Y utility index was 0.93 (0.11), with ceiling and floor effects of 60.3% and 0%, respectively. Multitrait–multimethod matrix confirmed the associations previously hypothesized for the EQ-5D-Y utility index [moderate with PROMIS-PAIS (0.38) and weak with ACQ (0.28)], and for the EQ-5D-Y dimension “problems doing usual activities” [moderate with the ACQ item (0.35) and weak with the PROMIS-PAIS item (0.17)]. Statistically significant differences were found in the EQ-5D-Y between groups defined by asthma control, reliever inhalers use, and second-hand smoke exposure, with mostly moderate effect sizes (0.45–0.75). The ICC of the EQ-5D-Y utility index in the stable subsamples was high (0.81 and 0.79); and responsiveness subsamples presented a moderate to large magnitude of change (0.68 and 0.78), though without statistical significance.ConclusionsThese results support the use of the EQ-5D-Y as a feasible, valid, and reliable instrument for evaluating HRQL in children with persistent asthma. Further studies are needed on the responsiveness of the EQ-5D-Y in this population.

Parental Support, Children's Physical Activity, Dietary Behaviors and Health-Related Quality of Life: Evidence From Three Asian Cities.

Parental support is crucial for children's healthy lifestyle formation. The present study examined the relations between parental support (i.e., encouragement and praise), children's perceived autonomy supportand behaviorsin the domains of physical activity (PA) and diet, and health-related quality of life (HRQoL) simultaneously in Asia. Children aged 9 to 12years and their parents (2065 dyads) in three Asian cities completed the respective questionnaires. Children reported perceived PA and dietary autonomy support, PA frequency, dietary behaviors, and HRQoL. Parents reported their PA and dietary support. The relations between parental support, children's perceived autonomy support an behaviors in the PA, and dietary domains as well as HRQoL were examined using multigroup path analyses. Among three cities, the indirect effects of parental support on children's self-report PA or HRQoL via children's perceived PA autonomy support were significant. A hypothetical sequential indirect effect from parental PA support to children's HRQoL via children's perceived PA autonomy support and self-report PA was observed in Hong Kong. In Hong Kong and Taipei samples, the indirect effect of parental PA support on children's HRQoL via children's self-report PA and the indirect effect of children's perceived PA autonomy support on HRQoL via children's self-report PA were significant. In Hong Kong and Shanghai samples, children's perceived dietary autonomy support showed positive effect on HRQoL via healthy food consumption. Congruent findings across three cities suggest that parents should provide support via encouragement and praise to facilitate children's perceived autonomy support and further increase PA and HRQoL. Our study adds to the literature by examining relations of parental support and children's healthy lifestyle in Asia and provides insights to parents and researchers.

Combined social communication therapy at home and in education for young autistic children in England (PACT-G): a parallel, single-blind, randomised controlled trial

Combined social communication therapy at home and in education for young autistic children in England (PACT-G): a parallel, single-blind, randomised controlled trial

Relationship Between Weight Status and Health-Related Quality of Life in School-age Children in China.

Background: Some studies from high-income countries suggest that overweight and/or obesity in children are negatively associated with health-related quality of life (HRQOL). However, the relationship between weight status and HRQOL is not well established in China, where obesity trends follow a different pattern compared with high-income countries. The risk of obesity is greater in children from higher socioeconomic backgrounds and higher in boys compared with girls.Objective: The aim of this study was to examine the relationship between weight status and HRQOL in children between 6 and 7 years old in this unique country context.Methods: Baseline HRQOL and demographic data were collected from children recruited to the CHIRPY DRAGON obesity prevention trial in China. HRQOL was measured using the Chinese version of the Child Health Utility-9D (CHU-9D-CHN) and the Pediatric Quality of Life Inventory™ (PedsQL™) instruments. CHU-9D-CHN utility scores were generated using 2 scoring algorithms (UK and Chinese tariffs). Height and weight measures were taken at school by trained researchers using standardized methods, and BMI z scores were calculated using the World Health Organization 2007 growth charts. The relationship between HRQOL and weight status was examined using multivariable analyses, adjusting for age, gender, and socioeconomic status.Results: Full data were available for 1539 children (mean age, 6 years). In both unadjusted and adjusted analyses, HRQOL, using both the CHU-9D-CHN and the PedsQL™, was marginally higher in children who were overweight or living with obesity compared with children with healthy weight, although this difference did not reach statistical significance. Separate analyses and models by gender showed that the relationship between weight status and HRQOL scores was similar in boys and girls.Conclusions: Our results suggest no statistically significant difference in HRQOL between children with overweight/obesity compared with those with healthy weight. These results have implications for the methods of economic evaluation for obesity treatment and prevention interventions within this population cohort and country setting, as there appears to be no discernible consequences on children’s HRQOL from living with overweight and obesity.

Capturing what matters: updating NICE methods guidance on measuring and valuing health

In July 2019, the National Institute for Health and Care Excellence (NICE) initiated a major review of its health technology evaluation methods to update its methods guide. This update has recently concluded with the publication of its health technology evaluation manual in January 2022. This paper reports the methods and findings of the review in relation to the recommended approach to use for the measurement and valuation of health-related quality of life (HRQoL) in submissions to NICE. Issues related to (i) the methods to use when NICE’s preferred measure (EQ-5D) is not appropriate or not available; (ii) adjusting health state utility values over time to account for age; (iii) measuring and valuing HRQoL in children and young people; and (iv) including carers’ QoL in economic evaluations were included in this review. This commentary summarises the methods used to undertake the review, its findings, and the changes to NICE methods that were proposed based on these findings. It also outlines topics where further research is needed before definitive methods guidance can be issued. The broad proposals described here were subject to a public consultation in 2020 and a further consultation on the updated methods guidance was completed in October 2021 before the publication of the manual in January 2022.

A Better Cardiopulmonary Fitness Is Associated with Improved Concentration Level and Health-Related Quality of Life in Primary School Children.

This study aimed to examine the physical fitness (PF) levels of primary school children and to determine the associations among PF, concentration, and health-related quality of life (HRQOL) in a subcohort. PF was assessed in 6533 healthy primary school-age children (aged 6–10 years, 3248 boys and 3285 girls) via standardized test batteries. Concentration was measured with the d2-R test, and KINDL questionnaires were used to determine HRQOL. Analysis of variance showed an increase in PF with age in all PF dimensions (all p < 0.001), except cardiopulmonary fitness (estimated VO2max) in girls (p = 0.129). Boys performed better in nearly all PF dimensions, except curl-ups, in all children aged ≥7 years (p < 0.05). Concentration levels increased in boys and girls aged 7–9 years (p < 0.001), whereas HRQOL did not (p = 0.179). The estimated VO2max had a strong impact on concentration (β = 0.16, p < 0.001) and HRQOL (β = 0.21, p < 0.001) in 9- to 10-year-olds. Cardiopulmonary fitness is important for improved concentration and better HRQOL in primary school-age children. However, longitudinal data are needed to provide further insight into the intraindividual relationships of PF and concentration over the course of child development and set up targeted prevention programs.

Health-Related Quality of Life in Children With Kaposiform Hemangioendothelioma.

Background and ObjectiveKaposiform hemangioendothelioma (KHE) is a rare, aggressive and borderline vascular tumor mainly occurring in infants and children. The aim of this study was to determine the health-related quality of life (HRQOL) in children with KHE.MeasuresA total of 91 children with KHE participated in this cross-sectional study. The HRQOL was assessed by the age-specific Pediatric Quality of Life Inventory Version 4.0 (PedsQL™ 4.0) Infant Scales, Family Information Form (FIF), Family Impact Module (FIM) and Generic Core Scales (GCS). For comparison, demographically matched healthy children were recruited as a control group. The main outcome measure of HRQOL was analyzed in the two groups. We determined related factors that influenced the HRQOL in children with KHE and their parents by using a stepwise multiple regression analysis.ResultsThe study found that the scores of each item in the family impact module (FIM) were lower than 75, which suggesting that KHE can make the parents of patients in a state of poor quality of life. The scores of physiological and psychosocial domains in all age groups of patients with KHE were lower than those of normal children (P < 0.01). Activity dysfunction is the factor influencing the physiological function score of all-age patients. KMP is the factor influencing the psychosocial function score of all-age patients.ConclusionsThe findings presented here suggest that patients with KHE have a poor HRQOL. KMP and activity dysfunction are risk factors for poor HRQOL in patients with KHE. However, lesion size, lesion location and education level of the mother and father were not related to the HRQOL.

Translation and validation of Indonesian version of Pediatric Quality of Life Inventory\u2122 (PedsQL\u2122) Neuromuscular Module

BackgroundThe Pediatric Quality of Life™ 3.0 Neuromuscular Module is an instrument to assess health-related quality of life (HRQoL) among children with neuromuscular diseases (NMDs) aged 2–18 years. This study aimed to determine whether the PedsQL™ 3.0 Neuromuscular Module Indonesian Version is valid and reliable.MethodsThis study used the Indonesian translation of the PedsQL™ 3.0 Neuromuscular Module after getting formal permission from the inventor, and the translation process followed the Mapi linguistic translation guidelines. This study administered the PedsQL™ 3.0 Neuromuscular Module Indonesian Version to 84 parents and 71 children. In addition, we used the Rasch model to analyze the psychometric properties.ResultsThe reliability of the total scale of the PedsQL™ Neuromuscular Module Indonesian Version shows good to very good criteria. On the parent proxy-report, Cronbach alpha was 0.95, person reliability was 0.84, item reliability was 0.93, person separation was 2.32, item separation was 3.61, person strata separation was 4 levels, and item strata separation was 5 levels. On the child self-report, Cronbach alpha was 0.93, person reliability was 0.81, item reliability was 0.81, person separation was 2.08, item separation was 2.06, person strata separation was 3 levels, and item strata separation was 3 levels. The total scale of the PedsQL Neuromuscular Module Indonesian Version shows fair to good construct validity in parent proxy-report (explained variance 51.9%; unexplained variance 8.4%) and child self-report (explained variance 40.9%; unexplained variance 12.6%). There were no misfit items in the parent proxy-report (infit 0.66–1.49; outfit 0.51–1.81; point measure correlation 0.36–0.93) and child self-report (infit 0.53–1.65; outfit 0.50–1.73; point measure correlation 0.31–0.90) identified by the Rasch models.ConclusionsThe PedsQL™ 3.0 Neuromuscular Modul Indonesian Version is a valid and reliable instrument in measuring HRQoL in Indonesian children with neuromuscular diseases.