Health-related Quality Of Life In Children Research Articles

A Comparison of the Psychometric Properties of the EQ-5D-Y-3L and EQ-5D-Y-5L Using Paediatric Multi-Instrument Comparison (P-MIC) Study Data.

The EQ-5D-Y is a generic health-related quality of life (HRQoL) measure suitable for children and adolescents. There are two versions of the instrument, which differ in response levels: the three- (Y-3L) and five-level (Y-5L) versions. The Y-5L has been developed to improve the psychometric performance of the Y-3L. This study aims to assess the psychometric properties of Y-5L and to compare the performance of Y-5L with Y-3L in separate self- and proxy-reported samples. Both versions of the instrument were administered to children/adolescents (self-report) or caregivers (proxy-report) of Australian children aged 5-18 years. The data were gathered as part of the Australian Paediatric Multi-Instrument Comparison (P-MIC) study. The Y-5L and Y-3L were evaluated in terms of ceiling effects, criterion validity, inconsistency, informativity, and test-retest reliability in both proxy and self-complete populations. Overall, 5945 respondents completed both the Y-3L and Y-5L, with 2083 proxy and 3862 self-completed responses. Ceiling effects were lower in the Y-5L than the Y-3L. Items from the samedomains show the strongest correlation for both samples. Regarding informativity, the Y-5L demonstrated more discriminatory power, indicated by having a higher Shannon diversity index in all domains of the Y-5L compared with the Y-3L. Test-retest showed fair agreement between responses at baseline and follow-up. The Y-5L has demonstrated moderate validity and fair reliability for use in measuring HRQoL in children and adolescents, both when self-reported by children or proxy reported. Overall, Y-5L is a dependable and valid extension from the Y-3L.

Safety and efficacy of monthly high-dose vitamin D3 supplementation in children and adolescents with sickle cell disease.

Little is known about the impact of vitamin D supplementation on hand grip strength (HGS) and health-related quality of life (HRQoL) in children and adolescents with sickle cell disease (SCD). We aimed to evaluate the safety and efficacy of monthly high-dose vitamin D3 supplementation and its implications on bone mineral density (BMD), HGS, and HRQoL in patients with SCD and healthy controls. The study included 42 children with SCD and 42 healthy matched controls. The study participants were supplemented with high-dose monthly oral vitamin D3. Changes in the serum level of 25(OH) vitamin D3, maximum HGS, and BMD from baseline to 6months were assessed, and the HRQoL questionnaire and Childhood Health Assessment Questionnaire (CHAQ) were used to evaluate the functional capacity. At baseline, SCD subjects had poorer growth status indicated by negative Z scores. Suboptimal BMD was detected by significantly lower Z score, and lower HGS and worse HRQL parameters were found compared to the controls (P < 0.001). Median 25(OH) vitamin D3 was significantly lower in SCD patients compared to controls (16.5 vs. 28ng/mL, respectively (P < 0.001)). After 6months of vitamin D supplementation, there was significant improvement in the DEXA Z-score (P < 0.001), limitation of physical health (P = 0.02), pain scores (P < 0.001), and CHAQ grades (P = 0.01) in SCD patients. A significant improvement in HGS (P < 0.001 and P = 0.005) as well as the CHAQ score (P < 0.001 and P = 0.003) was detected in the SCD group and controls, respectively. There were no reported clinical adverse events (AEs) or new concomitant medications (CMs) during the study duration, and safe levels of Ca and 25 (OH) D3 were observed at 3 and 6months for both groups. There was a significant positive correlation between HGS and total physical score (r = 0.831, P < 0.001) and a negative correlation with CHAQ score (r = - 0.685, P < 0.001). We also detected a significant positive correlation between vitamin D levels at 6months and HGS (r = 0.584, P < 0.001), pain score (r = 0.446, P < 0.001), and a negative correlation with CHAQ score (r = - 0.399, P < 0.001). Conclusion: Monthly oral high-dose vitamin D supplementation was safe and effective in improving vitamin D levels, HGS, and HRQoL in SCD children and healthy subjects, and BMD scores in SCD patients. Further randomized controlled trials are warranted to assess an optimal dosing strategy and to investigate the impact on clinically significant outcomes in children and adolescents with SCD and their healthy counterparts. Trial registration: ClinicalTrials.gov , identifier NCT06274203, date of registration: 23/02/2024, retrospectively registered. What is known: • Several studies have reported a high prevalence of vitamin D deficiency and suboptimal bone mineral density (BMD) in sickle cell disease (SCD) patients. • Musculoskeletal dysfunction is reported in SCD patients with a negative impact on physical activity and health-related quality of life (HRQL). • Little is known regarding the impact of vitamin D3 supplementation in children and adolescents with SCD. What is new: • We found that monthly oral high-dose vitamin D3 supplementation was safe, tolerated, and effective in improving serum vitamin D levels, HGS, BMD scores, and HRQL in SCD patients.

Health-related quality of life and impact of socioeconomic status among primary and secondary school students after the third COVID-19 wave in Berlin, Germany.

In the earlier phases of the COVID-19 pandemic, studies in Germany and elsewhere found an overall reduction in health-related quality of life (HRQoL) among students. However, there is little evidence on later pandemic stages as well as socioeconomic influencing factors. We aimed to (1) describe HRQoL in a Berlin student cohort at two time points in mid-2021, and to (2) analyze the effects of household income and education. We assessed HRQoL of students from 24 randomly selected primary and secondary schools in Berlin, Germany, with the KIDSCREEN-10 index in June and September 2021. To adjust for non-response bias, inverse probability weighting was applied. The potential effects of both household income and education (lower vs. higher) were estimated in generalized linear mixed models, based on prior assumptions presented in directed acyclic graphs. Our cohort comprised 660 students aged 7-19 years. In June 2021, 11.3% [95% CI = 9.0% - 14.0%] reported low HRQoL, whereas in September 2021, this increased to 13.7% [95% CI = 11.1% - 16.5%], with adolescent girls more frequently reporting low HRQoL at both time points (20% [95% CI = 17.1% - 23.3%] and 29% [95% CI = 25.5% - 32.5%]) compared to boys and younger children. While there was no statistically significant total effect of lower household income on HRQoL, a negative effect of lower household education was statistically significant (β = -2.15, SE 0.95, 95% CI = -4.01 to -0.29, p = 0.024). In summary, students' HRQoL in mid-2021 was better than that documented in other studies conducted at pandemic onset using KIDSCREEN-10. Female adolescents reported low HRQoL more often, and lower household education significantly reduced children's HRQoL. Support strategies for psychosocial wellbeing should consider socioeconomically disadvantaged children as important target groups.

Transcultural adaptation to Spain of the CDPQOL questionnaire specific for coeliac children.

This study aimed to translate, cross-culturally adapt, and validate the CDPQOL questionnaire, a coeliac disease (CD)-specific paediatric health-related quality of life (HRQoL) instrument (CDPQOL), in Spanish children with CD. The CDPQOL questionnaire has two versions for children aged 8-12 and 13-18. Translation and linguistic validation were performed following an international consensus process. Internal consistency was calculated using Cronbach's alpha and McDonald's omega coefficients, and convergent validity was assessed with average variance extracted (AVE). Confirmatory factor analysis (CFA) and exploratory factor analysis (EFA), when necessary, were carried out to assess the construct validity. A total of 235 children were included. In the 8-12 age group, a change in the distribution of items to a new structure of three dimensions (negative emotions, food feelings and social interaction) was required. In this new model, CFA supported the fit of the model (χ2/gl = 1.79, RMSEA = 0.077 (IC 95% 0.05-0.100), CFI = 0.969, TLI 0.960, SRMR = 0.081) and Cronbach's alpha and McDonald's omega coefficients were > 0.7 in all three dimensions. In the 13-18 age group, CFA showed that all fit indexes were acceptable (χ2/gl = 1.702, RMSEA = 0.102 (IC 95% 0.077-0.127), p < 0.001, CFI = 0.956, TLI = 0.947, SRMR = 0.103) and Cronbach's alpha and McDonald's omega coefficients were > 0.7 in all three dimensions, except for uncertainty dimension. Conclusions: The Spanish version of the CDPQOL questionnaire is a useful instrument to assess quality of life in coeliac children whose native language was Spanish spoken in Spain, with changes in item distribution in the younger age group questionnaire. What is Known: • The first specific questionnaire for coeliac children, Dutch Coeliac Disease Questionnaire (CDDUX), which focuses on diet, was translated into Spanish and validated allowing to evaluate the HRQoL of Spanish coeliac children. • Spanish Children and parents feel the disease had no substantial negative impacts on patient HRQoL using this questionnaire, similar to that observed with other countries. What is New: • The age specific for CD children (CDPQOL) was elaborated in the USA and focuses on other aspects not evaluated by CDDUX such as emotional and social issues related to living with CD. • The CDPQOL was translated into Spanish and validated allowing it to be used to assess Spanish coeliac children's QoL.

Differential associations between Quantity, content, and context of screen time, and Children's health-related quality of life: A two-wave study

Existing literature suggests that lengthy durations of screen time (ST) are associated with lower levels of health-related quality of life (HRQoL) and other negative outcomes in children. Nonetheless, the current available evidence largely relies on cross-sectional studies. In addition, data on the content and context (parent–child co-use and solitary use) of ST are scarce. We set out to conduct a one-year, two-wave longitudinal study to investigate the association between exposure to different types of ST and HRQoL among primary school children in Hong Kong, from 2021 to 2022. A population representative random sample (N = 1428) participated in the study. Results from pooled ordinary least squares regressions showed children's ST duration was significantly associated with worse HRQoL (β = −1.101, p < 0.0001). However, interactions of ST content and context, including parent–child co-use × TV viewing (β = 1.305, p < 0.0001), parent–child co-use × video gaming (β = 0.280, p < 0.0001), solitary use × video gaming (β = 0.198, p < 0.0001), and solitary use × social media use (β = 0.454, p < 0.0001) were significantly associated with better HRQoL. Our findings suggest that increased overall durations of ST are associated with worse HRQoL in children, but this association is impacted by the types of ST content and context.

Health-related quality of life in children and adolescents with Marfan syndrome or related disorders: a controlled cross-sectional study

BackgroundThis cross-sectional controlled study aims to assess health-related quality of life (HRQoL) of children and adolescents with a molecular diagnosis of Marfan syndrome (MFS) or related disorders and to evaluate the factors associated with HRQoL in this population. Sixty-three children with MFS and 124 age- and sex-matched healthy children were recruited. HRQoL was assessed using the Pediatric Quality of Life Inventory (PedsQL™) generic questionnaire. The correlation between HRQoL scores and the different continuous parameters (age, body mass index, disease severity, systemic score, aortic sinus diameter, and aerobic physical capacity) was evaluated using Pearson’s or Spearman’s coefficient. A multiple linear regression analysis was performed on the two health summary self-reported PedsQL™ scores (physical and psychosocial) to identify the factors associated with HRQoL in the MFS group.ResultsExcept for emotional functioning, all other domains of HRQoL (psychosocial and physical health, social and school functions) were significantly lower in children with MFS compared to matched healthy children. In the MFS group, the physical health summary score was significantly lower in female than in male patients (self-report: absolute difference [95%CI] = -8.7 [-17.0; -0.47], P = 0.04; proxy-report: absolute difference [95%CI] = -8.6 [-17.3; 0.02], P = 0.05) and also negatively correlated with the systemic score (self-report: R = -0.24, P = 0.06; proxy-report: R = -0.29, P = 0.03) and with the height Z-score (proxy-report: R = -0.29, P = 0.03). There was no significant difference in the physical health summary scores between the different genetic subgroups. In the subgroup of 27 patients who performed a cardiopulmonary exercise test, self- and proxy-reported physical health summary scores were highly correlated with their aerobic physical capacity assessed by peak oxygen consumption (VO2max) and ventilatory anaerobic threshold (VAT). In the multivariate analysis, the most important independent predictors of decreased physical health were increased height, decreased body mass index, decreased VAT and use of prophylactic therapy.ConclusionsThis study reports an impaired HRQoL in children and adolescents with MFS or related conditions, in comparison with matched healthy children. Educational and rehabilitation programs must be developed and evaluated to improve exercise capacity and HRQoL in these patients.Trial registrationClinicalTrials.gov, NCT03236571. Registered 28 July 2017.

Impact of SCOPE Program on Health-Related Quality of Life and Health Status of Children With Thalassemia: A Quasi-Experimental Study.

Background: Iron chelation, blood transfusions, and complication management are typical hospital requirements for children with beta-thalassemia major. This affects their health-related quality of life (HRQoL). The purpose of this study was to evaluate how the Supportive and Coping strategies, Ongoing Assessment, Prevention of Complications, and Empowerment (SCOPE) Program impacted the HRQoL and overall health of children with thalassemia. Method: The study employed a quasi-experimental pretest-posttest control group with a sequential follow-up design. A nonprobability purposive sampling technique was used to include 80 children with beta-thalassemia major in the sample, ranging in age from 6 to 18. Data were gathered using a Demographic Profile, PedsQLTM Version 4.0, and a Clinical Profile. The children in the intervention group received the SCOPE Program over the course of 6 months. The data collection included a pretest and a posttest with four follow-up evaluations. Results: During the pretest, children with thalassemia had a very low HRQoL. However, the final assessment after the intervention showed a significant difference in the mean scores between the two groups in the areas of physical functioning (p = .001), emotional functioning (p = .0001), social functioning (p = .001), and school functioning (p = .001). Growth indicators also demonstrated a notable improvement in the intervention group of children. Discussion: The SCOPE Program may be a thorough and efficient intervention for enhancing the general health of children with thalassemia. It can be used as a cooperative, well-organized, family-focused care strategy. Further study with a larger sample size is suggested.

Quality of life in children and adolescents after treatment for acute lymphoblastic leukemia according to the NOPHO ALL2008 protocol.

The improved outcome of childhood acute lymphoblastic leukemia (ALL) over the last decades has increased the importance of assessing late effects and health-related quality of life (HRQoL), particularly when evaluating and comparing outcomes in clinical trials. This study aimed to assess HRQoL in children treated for ALL according to the NOPHO ALL2008 protocol. Children, aged 1 to less than 18years at diagnosis, alive in first remission, and their parents, were asked to complete PedsQL 4.0 Generic Core Scales (self- and proxy-report) at ≥6months after end of therapy. Data on socioeconomic factors and parent-reported toxicity were collected through a study-specific questionnaire, and the NOPHO ALL2008 database was used to identify eligible families and add additional disease- and treatment-related data. HRQoL data were collected during 2013-2019 in Sweden, Finland, and Denmark. A total of 299 children were included. The older children (8years and older) reported similar HRQoL scores compared to Finnish reference data, except lower scores for School Functioning in high-risk patients. Scores from the parent-proxy and self-reports from 5-7-year olds were notably lower than reference. Parent-reported toxicity was associated with lower total and physical HRQoL scores in adjusted models for younger as well as older children in the self-report and parent-proxy versions, and also with lower psychosocial score in the parent-proxy. Self-reported HRQoL was similar to reference population. The most important determinant for HRQoL after end of ALL treatment was parent-reported toxicity during treatment. Thus, minimizing complications is an obvious focus for future treatment protocols.

Associations among COVID-19 Family Stress, Family Functioning, and Child Health-Related Quality of Life through Lifestyle Behaviors in Children.

The COVID-19 pandemic has resulted in lasting effects on children, necessitating a thorough understanding of its impact for effective recovery planning. This study investigated the associations among COVID-19 family stress, family functioning, children's lifestyle behaviors (i.e., healthy food intake, unhealthy food intake, physical activity, and screen time), and their health-related quality of life (HRQOL). Data from a 2022 survey of parents with children aged 5 to 12 (mean age of boys: 8.36, mean age of girls: 7.76) in the United States through the online Prolific platform were analyzed using path analysis and gender-based multi-group analysis. The results showed an inverse relationship between family stressors and functioning (β = -0.39, p < 0.05). COVID-19 family stress was negatively related to child physical HRQOL (β = -0.20, p < 0.05) but not psychosocial HRQOL. Family functioning showed a positive relation with child healthy food intake (β = 0.26, p < 0.05) and a negative relation with unhealthy diet consumption (β = -0.27, p < 0.05), while no significant associations were found with child physical activity and screen time. Family functioning was indirectly associated with both types of HRQOL through the child's eating patterns. These relationships were more pronounced for girls. The findings point to a complex interplay between family stress and functioning, dietary habits, and the HRQOL of children during the COVID-19 pandemic, particularly concerning girls' food intake and well-being.

Effect of diabetes self-management education on health-related quality of life of Tunisian children with type1 diabetes mellitus and their parents: A randomized controlled trial.

To assess the effect of diabetes self-management education (DSME) on health related quality of life (HRQoL) of Tunisian children/adolescents with type 1 diabetes mellitus and their parents. This monocentral study used a randomized controlled trial design, during five-month intervention and five-month follow-up and including 110 patients (54 in the DSME intervention group and 56 in the Individual Education by Pediatrician (IEP) control group) and their parents. Pediatric Generic Core Quality-of-Life Inventory 4.0-Scale (PedsQL4.0) evaluated HRQoL. At baseline, both groups had similar clinical features and PedsQL4.0 scores (p>0.05). In DSME, clinical outcomes were significantly improved from baseline to follow-up (p<0.001), while in the IEP group, which received no intervention, these outcomes remained unchanged. During follow-up, DSME showed higher PedsQL4.0 scores in parents' proxy-report and children/adolescents self-report (p<0.001). According to parents' proxy-report, PedsQL4.0 scores were significantly higher during follow-up compared to baseline in DSME (p<0.001) while they remained the same in IEP (p>0.05). DSME had higher percentage of change in the PedsQL4.0 scores than IEP (p<0.01). The median change varied from -5.01% to 0% vs 5.41% to 36.36% in IEP and DSME, respectively. Encouraging healthcare professionals to incorporate these interventions could enhance the HRQoL of diabetic children and bolster their self-esteem.

Social determinants of health rather than race impact health-related quality of life in 10-year-old children born extremely preterm.

Reducing healthcare disparities among children is extremely important given the potential impact of these disparities on long-term health-related quality of life (HRQL). Race and parental socioeconomic status (SES) are associated with child HRQL, but these associations have not been studied in infants born extremely preterm (EP), a population at increased risk for physical, cognitive, and psychosocial impairments. Achieving health equity for infants born EP across their life course requires identifying the impact of racism and SES on HRQL. We aimed to evaluate the association between self-reported maternal race, SES factors, and HRQL among 10-year-old children born EP. Participants were identified from an ongoing multicenter prospective longitudinal study of Extremely Low Gestational Age Newborns (ELGAN Study), born between 2002 and 2004, and evaluated at 10 years of age using the Pediatric quality of life (QoL) Inventory completed by their parent or guardian, assessing physical, emotional, social, school, and total (composite) QoL domains. Multivariable regression models were used to evaluate the relationship between QoL scores and self-identified maternal race, adjusting for SES factors (education level, marital status, and public insurance). Of 1,198 study participants who were alive at 10 years of age, 863 (72.0%) were evaluated at 10 years of age. Differences in mean 10-year QoL scores across racial groups were observed and were significant on univariate analysis. However, these associations attenuated when adjusted for the marital status, public insurance status, and education status of mothers. A comparison of children with English as the primary language spoken at home vs. any other language revealed a significant difference only in school QoL, in which non-English language was associated with more favorable school QoL scores. Among 10-year-old children born EP, differences in parent-reported QoL were associated with maternal SES factors but not with race. Our results suggest that interventions designed to improve the SES of mothers may enhance the QoL of children born EP. Furthermore, these results underscore that race is a social construct, rather than a biological variable, as we work toward greater equity in care provision.

Children's and parents' experiences of home care provided by hospital staff: A scoping review.

To describe what is known from existing scientific literature on children's and parents' experiences of hospital-based home care and to identify future research areas. The scoping review design used adheres to the methodological framework of Arksey and O'Malley, and to the PRISMA-ScR checklist. A systematic search was conducted, and peer-reviewed scientific papers were screened through the application of Rayyan software. Data were extracted and presented in table and synthesised thematically as narrative text. Searches were carried out November 2021 and updated November 2022 in the CINAHL, MEDLINE, Embase, Cochrane, Scopus, Web of Science, Academic Search Elite, and Amed databases and Google Scholar. A total of 1950 studies were screened and assessed for eligibility. Eight studies met the inclusion criteria by reporting on parents' experiences, whereas five out of these eight studies also reported on the experiences of children. Parents of children with cancer and preterm children reported feeling more in control, being empowered, and being more connected to their children's care team when their children were receiving hospital-based home care. The family's own resources were activated, and they felt more involved in their children's care compared to being in an inpatient setting. Children with cancer, acute infection, chronic disease, and/or a syndrome reported feeling safer and more comfortable in their home environment and experienced better interaction with their care providers. Some aspects of the children's health-related quality of life (HRQOL) were improved. The identified studies indicate that hospital-based home care is a valued alternative to traditional inpatient care by both parents and children. The mode of care has no crucial negative effects. Future studies should encompass the experiences of children with different diagnoses and syndromes and compare patients treated in a traditional hospital setting with those in a hospital-based home-care programme. Children's and parents' experiences of HBHC indicate that it offers a good solution if parents are well prepared and feel in control. In addition, certain structural conditions must be in place before this type of care can be established: there must be a certain number of patients and the hospital must not be too far away. In the field of neonatal home care, professionals should be more responsive to fathers' needs and tailor support by focusing on their individual experiences and needs. Our findings may guide and inform best practice for present and future providers of HBHC. Hospital-based home care can offer families a greater degree of autonomy, more flexible care options, improved family functioning, improved communication with care providers, and more control over the child's care. When certain structural conditions are met, such as a certain number of patients, the hospital not being too far away, and parents being well prepared and feeling in control, then hospital-based home care is valued as an alternative to traditional inpatient care. Specific aspects of children's HRQOL may improve, and the psychosocial burden on the family does not increase. HBHC provides a valued alternative to traditional inpatient care and allows families to receive care in the comfort of their own home. Our findings may guide and inform best practice for present and future providers of hospital-based home care. In this scoping review, we have adhered to the Preferred Reporting Items for Systematic reviews and Meta Analyses Extension for Scoping Reviews checklist. There has been no direct patient or public contribution to the review. Not required.

Trajectories of illness perceptions in paediatric cancer patients and their parents and associations with health-related quality of life: Results of a prospective-longitudinal study.

In paediatric oncology, little is known about trajectories of illness perceptions and their longitudinal associations with health-related quality of life (HRQoL). Therefore, the aim of this study was to investigate changes in illness perceptions in children and parents over a one-year-period and to investigate predictive value of child's and parent's illness perceptions during acute treatment for child's HRQoL 1year later. N=65 child-parent-dyads participated in a longitudinal study (retention rate: 80.2%). Children were 4-18years of age and underwent acute cancer treatment at baseline. Children and parents reported on their own illness perceptions (Illness-Perception-Questionnaire-Revised), as well as on the child's HRQoL (KINDL-R) at baseline and one-year-follow-up. Paired-samples t-tests were calculated to investigate changes over time. A hierarchical multiple regression analysis was performed to investigate predictive value of child's and parent's illness perceptions for child's HRQoL. Child's HRQoL t(63)=-6.73, p<0.001, their perceptions of coherence (i.e. understanding; t(54)=-2.36, p=0.022) and consequences of their illness (t(54)=2.86, p=0.006), and parent's perception of cyclical trajectory (t(61)=2.06, p=0.044) improved from baseline to 1-year-follow-up. All other illness perceptions remained stable. Exploratory post-hoc analyses showed differences in the pattern of change in age-, gender-, and diagnosis-specific subgroups. After controlling for baseline levels of HRQoL, child's perceptions of symptoms and consequences were independent predictors of their HRQoL 1year later (R2=0.396, F(2,52)=10.782, p<0.001), whereas no parent's illness perceptions added predictive value. In paediatrics, child's and parent's illness perceptions should be assessed. Our findings highlight the importance of illness perceptions as potential modifiable variables in interventions to improve child's HRQoL.

Growth hormone treatment in children with short stature: impact of the diagnosis on parents.

This prospective multicenter study aimed (1) to examine changes in parent-reported health-related quality of life (HRQOL) of children with short stature and the effects of the children's condition on parents themselves within the first year of human growth hormone (hGH) treatment and (2) to predict effects on parents based on main and interaction effects of children's HRQOL and increase in height. A total of 110 parents of children aged 4-18 years, diagnosed with idiopathic growth hormone deficiency, small for gestational age, or idiopathic short stature, were recruited from 11 participating German pediatric endocrinologists and asked to fill out the short stature-specific Quality of Life in Short Stature Youth (QoLISSY) Questionnaire before hGH treatment was initiated and one year later. Negative effects of the children's short stature on the parents decrease over time, independent of diagnosis and treatment status. Furthermore, treatment status and height increase moderated the links between children's improved HRQOL as perceived by their parents and decreased caregiving burden. Based on the children's improved HRQOL and the parent's decrease in caregiving burden, patient-reported outcomes that consider parental and child's perspectives should be considered when deciding on hGH treatment for children.

Determinants of health-related quality of life in healthy children and adolescents during the COVID-19 pandemic: Results from a prospective longitudinal cohort study

Understanding health-related quality of life (HRQOL) in children and adolescents, during a pandemic and afterwards, aids in understanding how circumstances in their lives impact their well-being. We aimed to identify determinants of HRQOL from a broad range of biological, psychological, and social factors in a large longitudinal population-based sample. Data was taken from a longitudinal sample (n = 1843) of children and adolescents enrolled in the prospective school-based cohort study Ciao Corona in Switzerland. The primary outcome was HRQOL, assessed using the KINDL total score and its subscales (each from 0, worst, to 100, best). Potential determinants, including biological (physical activity, screen time, sleep, etc.), psychological (sadness, anxiousness, stress), and social (nationality, parents’ education, etc.) factors, were assessed in 2020 and 2021 and HRQOL in 2022. Determinants were identified in a data-driven manner using recursive partitioning to define homogeneous subgroups, stratified by school level. Median KINDL total score in the empirically identified subgroups ranged from 68 to 83 in primary school children and from 69 to 82 in adolescents in secondary school. The psychological factors sadness, anxiousness, and stress in 2021 were identified as the most important determinants of HRQOL in both primary and secondary school children. Other factors, such as physical activity, screen time, chronic health conditions, or nationality, were determinants only in individual subscales.Conclusion: Recent mental health, more than biological, physical, or social factors, played a key role in determining HRQOL in children and adolescents during pandemic times. Public health strategies to improve mental health may therefore be effective in improving HRQOL in this age group. What is Known:• Assessing health-related quality of life (HRQOL) in children and adolescents aids in understanding how life circumstances impact their well-being.• HRQOL is a complex construct, involving biological, psychological, and social factors. Factors driving HRQOL in children and adolescents are not often studied in longitudinal population-based samples.What is New:• Mental health (stress, anxiousness, sadness) played a key role in determining HRQOL during the coronavirus pandemic, more than biological or social factors.• Public health strategies to improve mental health may be effective in improving HRQOL in children.

Clinical outcomes measurement in pediatric lower limb prosthetics: A scoping review.

This study aimed to identify clinical measures that have been used to evaluate function, health related quality of life (HRQoL), and/or satisfaction in children who use lower limb prostheses (LLP). The data reported on psychometric properties for children who use LLP were collected for each measure. First, PubMed, CINAHL, and Web of Science databases were searched using broad search terms to identify standardized outcome measures of function, HRQoL, and/or satisfaction with treatment used in pediatric LLP research published in 2001 or after. For each of the eligible measures found, a second search was performed to identify psychometric properties (e.g., validity, reliability) assessed with children who use LLP. Forty-four standardized outcome measures were identified from 41 pediatric LLP research articles. Five measures (i.e., Gait Outcomes Assessment for Lower Limb Differences, Functional Mobility Assessment, Child Amputee Prosthetics Project- Prosthesis Satisfaction Inventory, Child Amputee Prosthetics Project- Functional Scale Index, and Lower Limb Function Questionnaire) had data on psychometric properties for children who use LLP. Few studies report psychometric data for assessing the overall HRQoL, function, and/or satisfaction for children who use LLP. Further research is needed to validate or create new outcome measures that assess the HRQoL, satisfaction, and/or function of children who use LLP.

Changes in health-related quality of life and sleep habits after a 6-month non-randomised cluster-controlled trial among children with overweight or obesity.

Being overweight or obese can have severe negative psychological impacts and reduce health-related functioning. To improve health-related quality of life (HRQoL) and sleep habits for children with overweight or obesity, it is important to design and implement effective interventions. The aim of this study was to evaluate the effects of a 6-month family-based lifestyle intervention on HRQoL and sleep habits in Norwegian children with overweight or obesity in a primary-care setting. This 6-month, non-randomised, cluster-controlled trial included Norwegian children aged 5-13years with overweight or obesity and their parents. A questionnaire was filled out by the parents. A total of 33 and 52 children in the control group and 41 and 78 children in the intervention group answered the HRQoL and sleep habits questions, respectively, and were included. The intervention group received individual family counselling and participated in physical activity groups and nutrition courses. The Children's Sleep Habits Questionnaire (CSHQ) and Kidscreen-10 index were used to assess sleep habits and HRQoL. At baseline, the mean average scores for HRQoL were 50.0 [standard deviation (SD) 8.1] for the intervention group and 49.0 (SD 10.1) for the control group. For sleep habits at baseline, the mean average scores were 45.2 (SD 11.8) for the intervention group and 46.0 (SD 11.9) for the control group. No significant changes in HRQoL and sleep habits after the intervention were revealed. Overall, the family-based lifestyle intervention targeting overweight and obese children in a primary-care setting showed no significant effect on HRQoL or sleep quality.

Prospective Evaluation of Health-Related Quality-of-Life in Children with Craniosynostosis.

To investigate health-related quality of life (HRQL) in children aged 2 to 7 years, who have undergone surgery for craniosynostosis. Cross-sectional survey. A tertiary pediatric academic medical center. Children with craniosynostosis who underwent surgical correction, and who were 2-7 years old at the time of the study. Children from families that did not speak English were excluded. Caregivers were asked to fill out the Pediatric Quality of Life Inventory (PedsQL) Core Parent Report and the PedsQL Cognitive Functioning Scale. PedsQL: Psychosocial Health Summary Score, Physical Health Summary Score, Total Core Score, Cognitive Functioning Scale Score. Scores range from 0 to 100, with higher scores reflecting greater QoLSubject factors: comorbidities, syndromic status, type of craniosynostosis, type of surgery. The study included 53 subjects, of whom 13.2% had a syndrome. Core and cognitive scores did not depend on presence of a syndrome or suture involved. Subjects who underwent posterior cranial distraction achieved higher Total Core Scores than subjects who underwent open vault remodeling. Among subjects with sagittal craniosynostosis, there was a tendency for higher scores among children who underwent minimally-invasive surgery compared to those who underwent open vault remodeling. This study demonstrates similar HRQL among children with and without a syndrome, higher HRQL among children undergoing posterior cranial distraction than those undergoing open vault remodeling, and trends towards higher HRQL in children with sagittal craniosynostosis who underwent minimally-invasive surgery compared to those who underwent open vault remodeling.

Trajectory of health-related quality of life in parents of children treated with epilepsy surgery versus medical therapy.

Child health-related quality of life (HRQOL) has been shown to improve after epilepsy surgery and is linked to parent HRQOL. We postulated that the HRQOL of parents whose children underwent epilepsy surgery would improve over two years compared to those treated with medical therapy. The aim of the study was to evaluate the trajectory of HRQOL of parents whose children received treatment with epilepsy surgery or medical therapy over two years. This multi-center study recruited parents whose children were evaluated for epilepsy surgery. Parents completed measures of care-related QOL (CarerQOL) at the time of their children's surgical evaluation, 6 months, 1 year, and 2 years later. Additional measures included parent anxiety and depression, satisfaction with family relationships, family resources and demands, and child clinical variables. A linear mixed model was used to compare the trajectories of parent HRQOL of surgical and medical patients, adjusting for baseline clinical, parent, and family characteristics. There were 111 children treated with surgery and 154 with medical therapy. The trajectory of parent HRQOL was similar among parents of surgical and medical patients over the two-year follow-up. However, HRQOL of parents of surgical patients was 3.0 points higher (95%CI -0.1, 6.1) across the follow-up period compared to parents of medical patients. Parents of seizure-free children reported 2.3 points (95%CI 0.2, 4.4) higher HRQOL relative to parents of non-seizure-free children across the two-year follow-up. Parent HRQOL did not improve after their children were treated with epilepsy surgery, possibly related to ongoing comorbidities in children.

Portuguese Validation of the TAPQoL: A Health-Related Quality of Life Instrument for Children Aged 0-6 Years.

In Portugal, there are few generic and specific instruments to assess health-related quality of life (HRQoL) in children, especially those of preschool age. This study aimed to adapt and validate the Portuguese version of the Preschool Children Quality of Life Questionnaire (TAPQoL) in a community and clinical sample of children aged 0-6 years. The parents of 409 healthy children and 137 children undergoing treatment for burns and acute lymphoblastic leukemia completed the TAPQoL and were assessed on psychological morbidity and family functioning. Exploratory and confirmatory factor analyses were performed, as well as analysis of the psychometric properties as shown by internal consistency measures, convergent validity, and average variance extracted. Confirmatory factor analysis confirmed an 11-factor structure with good psychometric properties. The current version of the TAPQoL is a valid and reliable instrument for assessing HRQoL in Portuguese preschool children in community and clinical settings.