Health-related Quality Of Life In Children Research Articles

Clustering of Dietary Patterns Associated with Health-Related Quality of Life in Spanish Children and Adolescents.

The aim of the current study was to examine the association between dietary patterns and health-related quality of life (HRQoL) among Spanish children and adolescents. A modified version of the parental version of 10 items of the Screening for and Promotion of Health-Related Quality of Life in Children and Adolescents-a European Public Health perspective (KIDSCREEN-10) was used to assess children's HRQoL in three areas: subjective physical, mental, and social status. To evaluate dietary habits, a food frequency questionnaire was employed. To identify different feeding patterns in the sample of children and adolescents examined, cluster analyses were carried out. In addition, a generalized linear model with a Gaussian distribution was applied to test the associations between the determined clusters and HRQoL. The lowest HRQoL was identified in participants located in the unhealthiest cluster (Cluster 1) (mean [M] = 85.2; 95% confidence interval [CI] 83.7 to 86.7). In comparison with the unhealthiest cluster (Cluster 1), a greater estimated marginal mean of HRQoL was identified for participants in the moderately healthy cluster (Cluster 1) (p = 0.020) and in the healthiest cluster (Cluster 2) (p = 0.044). Based on our findings, dietary habits based on the low consumption of bread, cereals, and dairy products (mainly), together with low intake of fruits and vegetables, are related to lower HRQoL in children and adolescents. These results underscore the importance of promoting balanced and nutrient-rich diets among young populations. Public health initiatives should focus on educating parents, caregivers, and children about the benefits of a varied diet that includes adequate portions of fruits, vegetables, whole grains, and dairy products.

Religious Belief Among Women in Australia: Characteristics and Role in Influencing Children's Health-Related Quality of Life and Lifestyle.

Religiosity can be an important factor in women's health-related behaviour, attitudes, and decision-making. Evidence however, regarding the religiosity of mothers and its influence on child health, is scarce. Based on a large population-based cohort in Australia, we aim to examine the religiosity of women in Australia and the association of maternal religiosity with children's health-related quality of life (HRQOL) and lifestyle. Our findings indicate that (1) maternal religious involvement was higher for women with higher education levels, ascertained religious values in decision-making, and abstinence from binge drinking in the household, (2) maternal religiosity positively influenced their children's HRQOL, (3) children of mothers who were more religious had less worries or fewer school-work problems, but the children of mothers with stronger religious beliefs used more internet/computer during the week but had less time playing games on weekends. This study provides additional specificity to inform future health interventions in religious community contexts to enhance the positive influence of maternal religious belief for better development of their children.

Dyskinetic Cerebral Palsy in Children: Clinical Perspectives on Common Comorbidities and Health-Related Quality of Life.

The data on specific comorbidities in children with dyskinetic cerebral palsy (DCP) is limited. We evaluated the pattern of comorbidities and health related quality of life (HRQOL) in these children and compared them between etiological and motor impairment subgroups. This cross-sectional study was conducted over 18 months in children with DCP of both sex, and age between one and 14 years. Comorbidities were assessed using standardized scales such as gross motor functioning scale (GMFCS), developmental profile-3 (DP-3), developmental behaviour checklist, sleep behaviour questionnaire (SBQ), and caregiver questionnaire. Sixty-five children with DCP were evaluated (hyperbilirubinemia n = 43, 66% and perinatal asphyxia n = 19, 29%). The majority of children were severely affected in gross motor functioning (level IV 29.2% and level V 53.8%). Epilepsy was seen in 21.5% of cases (19% in hyperbilirubinemia and 32% in asphyxia, p = 0.4). The mean age of onset of seizures was 15.4 + 20.6 months (range 2-72). Visual problems were seen in 54% of cases and included upgaze palsy, squint, refractive error, optic atrophy and cortical blindness. A significant proportion of children with hyperbilirubinemia had upgaze palsy as compared to those with perinatal asphyxia (70% vs. 32%, p 0.01). Rest of the visual problems were not significantly different between the two etiological subgroups. Drooling (87.6%), protein-energy malnutrition (66.6%), and reflux (57%) were the most common gastrointestinal problems in children with DCP. Children with DCP showed problems in social relating (33.8%), anxiety (26.2%), and self-absorbed behaviour (7.7%). However, there were no statistically significant differences between the etiological, motor impairment and age-based subgroups. Children with DCP had high scores on SBQ, suggesting sleep problems. Sleep scores were similar in the hyperbilirubinemia and perinatal asphyxia subgroups. Greater sleep problems were noted in children aged < 4y (70.6 + 10.1 vs. 56.5 + 11.3, p < 0.05 as compared to children above 4y of age) and severe motor impairments (68.2 + 11.3 vs. 57.2 + 13.1, p 0.008 as compared to mild-moderate motor impairment). Poor overall developmental scores were seen in 61.5% children and were significantly associated with GMFCS (p 0.04). The majority of children showed impairments in physical (58.5%), adaptive behaviour (58.5%), social-emotional (50.8%), cognitive (60%) and communication (52%) subscales of DP-3. Cognitive impairment was similar in the etiological (hyperbilirubinemia vs. perinatal asphyxia, p = 0.3), and motor impairment (mild-moderate vs. severe, p = 0.9) subgroups. HRQOL was significantly affected by motor impairment in positioning-transfer (p value 0.0001), and interaction-communication domains (p value 0.0001), however, there was no difference based on the etiology of hyperbilirubinemia and asphyxia. Children with DCP demonstrate several comorbidities and impaired quality of life. These are similar in hyperbilirubinemia and perinatal asphyxia cohorts, expect for significant proportion of upgaze palsy in DCP secondary to hyperbilirubinemia. Younger children have more problematic behaviour and impaired sleep quality. Severe motor disability influences the developmental outcomes, cognition, sleep and HRQOL in children with DCP.

Protocol for scoping review: Instruments for assessing vision-specific health-related quality of life in children and adolescents with visual impairment.

Childhood visual impairment (VI) is less common than in adults, but research has demonstrated that it can have significant long-term negative impacts on the health-related quality of life (HR-QoL) of children and adolescents. Unfortunately, there is currently a lack of vision-specific instruments available for accurately assessing HR-QoL in children and adolescents with VI, particularly in resource-limited settings. The objective of this scoping review is to methodically evaluate the evidence pertaining to (1) the accessibility and usage of instruments specifically designed to assess HR-QoL in children and adolescents who have VI, (2) summarise studies on HR-QoL in children and adolescent with VI, and (3) describe the psychometric properties of vision-specific instruments used for assessing HR-QoL in children and adolescents with VI. The review will be conducted in accordance with the Joanna Briggs Institute (JBI) guideline (2020) for scoping reviews, utilizing frameworks by Arksey and O’Malley, and methodological enhancements suggested by Levac (2010). A systematic search will be performed through various databases, including PubMed, Science Direct, Scopus, Web of Science, and EBSCOhost, to identify peer-reviewed articles published in English from inception until 31 December 2023. The EBSCOhost platform will include several databases, such as Academic Search Complete, APA PsycINFO, Health Source-Consumer Edition, Health Source: Nursing/Academic Edition, and Open Dissertations. The extracted data will be analysed narratively using QualCoder 1.9 version, and the study’s findings will be reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). The researchers anticipate that the literature will assist in exploring and relating various types of HR-QoL tools used globally. This review’s conclusion will help researchers ascertain research gaps in vision-related QoL instruments based on different economies, countries, and environments. This will further aid researchers in planning and developing tools suitable for African contexts and languages.

Eteplirsen Treatment for Duchenne Muscular Dystrophy: A Qualitative Patient Experience Study.

Duchenne muscular dystrophy (DMD) is characterized by rapid functional decline. Current available treatment options aim to delay disease progression or stabilize physical function. To aid in healthcare providers' understanding of the symptoms of disease that impact patients' experience, this study explored children's physical functioning, activities of daily living (ADLs), and health-related quality of life (HRQoL) after receiving eteplirsen, a weekly infusion indicated for individuals with DMD with exon51 skip-amenable mutations. Fifteen caregivers of male individuals with DMD participated in a 60-min, semi-structured interview. Open-ended questioning explored changes in the children's condition or maintenance in abilities since eteplirsen initiation. Children with DMD (age 7-15years [mean 10.9]; steroid treatment at interview, n = 8; time since eteplirsen initiation 3-24months [mean 14.9]) were described by caregivers as ambulatory (n = 9) and non-ambulatory (n = 6). Caregivers of ambulatory children reported improvements or maintenance of walking ability (n = 7/9), running (n = 6/9), and using stairs (n = 4/9). Continued decline in using stairs was reported by two caregivers. In upper-limb functioning, improvements or maintenances in fine-motor movements were reported by nearly half of all caregivers (n = 7/15), with one caregiver noting a continued decline. Subsequent improvements or maintenances in ADLs were described. Improvements or maintenances in fatigue (n = 9/15), muscle weakness (n = 7/15), and pain (n = 6/15) were reported, although some caregivers described a continued decline (n = 3/15 fatigue, n = 1/15 muscle weakness, n = 2/15 pain). Importantly, most caregivers who reported maintenances in ability perceived this as a positive outcome (n = 6/9). This exploratory study indicated that most caregivers perceived improvements or maintenances in aspects of their child's physical functioning, ADLs, and HRQoL since eteplirsen initiation, which they perceived to be a positive outcome.

Vitulia questionnaire: a new instrument to evaluate quality of life in children aged 4-7 years with food allergy.

Background. Food allergy (FA) negatively affects health-related quality of life (HR-QoL) of children and caregivers. To date, no questionnaire self-compiling assessing the HR-QoL in pre-school children with FA is available. The aim of this study is to develop and validate a self-administered, rapid and easy questionnaire to evaluate the HR-QoL in children ≥ 7 years with IgE-mediated FA. Methods. A two-center prospective study was conducted including children aged 4-7 years with IgE-mediated FA. The Vitulia questionnaire was administered to study participants at the baseline (T0) and after one month (T1). To assess the feasibility and reliability, the Vitulia questionnaire was compared with other two pre-existing questionnaires: FAQLQ-PF and the KiddyKindl, which were also tested at both T0 and T1. The validation phase aimed to assess the following psychometric properties: convergent validity, internal consistency, discriminant validity and sensitivity to change. Results. One hundred patients (62% male, mean age 5.4 ± 1.2 years) were enrolled. The Vitulia questionnaire showed a good internal consistency along with an excellent reliability and repeatability of the measure. Another noteworthy feature of the questionnaire was its discriminant validity as demonstrated by the ability to provide different scores in subgroups, which have differences in terms of quality of life. On the other hand, the questionnaire seems not be sensitive to changes in health status over time. Conclusions. The Vitulia questionnaire represents a valid tool, quick and easy to interpret, which can be used to assess the quality of life in preschool children with IgE-mediated FA.

Evaluating the Influence of Parental HIV Status on Well-being of Children and Adolescents in Lagos State, Nigeria

Background and Purpose: The quality of life (QoL) of children and adolescents living with HIV is a crucial area of public health concern, particularly in regions heavily impacted by HIV. Parental HIV status can significantly influence different dimensions of a child’s life, including their emotional, social, and physical health. Nigeria is one of the countries having the highest HIV prevalence rates; understanding how parental HIV status affects children is essential for designing effective intervention and support systems. This study aims to investigate the relationship between parental HIV status and health-related QoL (HRQoL) among children and adolescents. We hope to provide insights that can improve the lives of young individuals in Lagos State, Nigeria. By examining demographic factors and health-related variables, this research seeks to advise targeted strategies to support families affected by HIV. Materials and Methods: This retrospective study collected data at the Pediatric and Adolescent Clinic, the Clinical Sciences Department of the Nigerian Institute of Medical Research (NIMR), Yaba, Lagos State, Nigeria, between May and July 2019. The Institutional Review Board of NIMR granted ethical approval for the study. The study population consisted of 113 children and young people with HIV. Participants were randomly selected and assessed for eligibility. Then, written informed consent was obtained before enrollment in the main study. Data on sociodemographic characteristics, HIV-related health metrics, and HRQoL were collected using a case record form and a validated questionnaire to assess the pediatric QoL (PedsQL). A total of 108 participants (60 with single parent HIV-positive and 48 with both parents HIV-positive) were included. The data were analyzed using STATA software, version 16, employing the chi-square test and logistic regression to examine the determinants influencing HRQoL. We employed the PedsQL version 4, and the clinician filled out the questionnaire in the Pediatric Clinic. Results: Participants’ mean ages were 13.6 years (single parent HIV positive) and 14.2 years (both parents HIV positive), with significant associations between age and parental HIV status (P&lt;0.05). Fathers were primary caregivers for 46.7% (single parent HIV positive) and 56.3% (both parents HIV positive) of participants (P&lt;0.05). Parental status (alive or deceased) and education level were significantly associated with parental HIV status, with most participants having secondary education. Most participants identified as Christians (86.7% single parent HIV positive and 87.5% both parents HIV positive). The CD4 cell counts below 500 were more common in participants with both parents HIV positive, though with no significant association (P&gt;0.05). The HRQoL scores were significantly associated with parental HIV status (P&lt;0.05), with better scores in psychosocial and physical domains. Logistic regression showed no significant links between parental HIV status and gender, age group, or primary caregiver’s gender. Participants with both HIV-positive parents were less likely to have both parents alive. Conclusion: Parental HIV status significantly affects demographic factors and HRQoL in children and adolescents. These findings highlight the necessity for specialized interventions and support mechanisms to enhance the QoL for families affected by HIV.

Health-Related Quality of Life Using the KIDSCREEN-27 Questionnaire among Adolescents with High Myopia.

Background/Objectives: The aim of the study was to explore Health-Related Quality of Life (HRQoL) using the KIDSCREEN-27 questionnaire among adolescents with high myopia (HM). Methods: Sixty-nine adolescents with HM and 71 healthy participants aged 12-17 years and their parents or legal guardians were enrolled in the study. Results: Adolescents with HM showed significantly lower scores on the Physical Well-Being dimension in comparison with controls (p = 0.003), particularly girls with HM in comparison with girls from the control group (p = 0.008), and 15-17-year-old adolescents in comparison with same-aged controls (p = 0.020). Girls with HM were characterised by significantly worse scores on the Psychological Well-Being dimension compared with boys with HM (p < 0.042). Sociodemographic factors and refractive error, its duration, and acceptance of disease had no impact on HRQoL. Conclusions: HM may have a negative impact on the HRQoL of children, affecting particularly the physical and psychological well-being of girls. It is important that a holistic approach to the treatment of HM in adolescents is taken by measuring their HRQoL as part of the routine diagnostic process. Use of the KIDSCREEN-27 questionnaire seems justified as it allows for determination of the type of intervention required to improve the HRQoL of individuals affected by the disease.

Exploring Health-Related Quality of Life in Children With Hypertrophic Cardiomyopathy and Relationship to Physical Activity.

Hypertrophic cardiomyopathy is a burdensome condition that inflicts both physical and psychological impairment on those with the disease, negatively impacting health-related quality of life (HRQoL). Given the abundance of evidence suggesting a role of physical activity (PA) in modulating HRQoL in healthy populations of children, we sought to determine the relationship between HRQoL and PA in children diagnosed with hypertrophic cardiomyopathy. A multicenter prospective observational cohort study was conducted, with patients with hypertrophic cardiomyopathy aged 10 to 19 years being provided a wrist-worn activity tracker (Fitbit Charge HR) to wear for 14 days. Patients self-reported on Pediatric Quality of Life 4.0 quality of life inventory items, which were associated with PA metrics following covariate adjustment using linear regression. A total of 56 participants were recruited to the study. The median age at enrollment was 15.5 years (interquartile range, 13.8-16.8), and 16 out of 56 (29%) of the cohort were girls. The cohort reported decreased metrics of physical, psychosocial, and total summary scores compared with health reference populations, with scores comparable with that of published populations with chronic disease. Increased physical HRQoL scores were significantly associated with increased daily steps taken, distance traveled, and flights of stairs climbed. These results show that impaired PA correlates with reduced HRQoL in children with hypertrophic cardiomyopathy, suggesting PA may partially mediate HRQoL in this population.

Health-related quality scores in childhood interstitial lung disease: Good agreement between patient and caregiver reports.

Childhood interstitial lung disease (chILD) is a heterogeneous group of mostly chronic respiratory disorders. Assessment of health-related quality of life (HrQoL) in chILD has become increasingly important in clinical care and research. The aim of this study was to assess differences between patient-reported (self) and caregiver-reported (proxy) HrQoL scores. This study used data obtained from the chILD-EU Register. After inclusion (baseline), the patient's health status was followed up at predefined study visits. At each study visit, caregivers and patients were handed validated, age-specific HrQoL questionnaires. HrQoL data entered at baseline were used to compare self- and proxy-reported HrQoL scores. For the longitudinal analysis, we compared HrQoL scores between the baseline and the next follow-up visit. No differences between patient- and caregiver-reported HrQoL scores were found for school functioning, chILD-specific questionnaire score, and physical health summary score. Self-reported HrQoL scores were higher for the subscales emotional functioning (77.4 vs. 70.7; p < .001), social functioning (81.9 vs. 76.2; p < .001), as well as psycho-social summary score (76.5 vs. 71.8; p < .001) and total score (74.7 vs. 70.8; <.001). The longitudinal analysis showed that a significant change in a patient-reported HrQoL score resulted in a significant change in a caregiver-reported HrQoL score after a mean time of 11.0 months (SD 9.4). We found a good agreement between children- and caregiver-related HrQoL scores. In chILD, caregivers are able to sense changes in children's HrQoL scores over time and may be used as a proxy for children unable to complete HrQoL questionnaires.

A multicenter randomized trial to compare automatic versus as-needed follow-up for children hospitalized with common infections: The FAAN-C trial protocol.

Physicians commonly recommend automatic primary care follow-up visits to children being discharged from the hospital. While automatic follow-up provides an opportunity to address postdischarge needs, the alternative is as-needed follow-up. With this strategy, families monitor their child's symptoms and decide if they need a follow-up visit in the days after discharge. In addition to being family centered, as-needed follow-up has the potential to reduce time and financial burdens on both families and the healthcare system. As-needed follow-up has been shown to be safe and effective for children hospitalized with bronchiolitis, but the extent to which hospitalized children with other common conditions might benefit from as-needed follow-up is unclear. The Follow-up Automatically versus As-Needed Comparison (FAAN-C, or "fancy") trial is a multicenter randomized controlled trial. Children who are hospitalized for pneumonia, urinary tract infection, skin and soft tissue infection, or acute gastroenteritis are eligible to participate. Participants are randomized to an as-needed versus automatic posthospitalization follow-up recommendation. The sample size estimate is 2674 participants and the primary outcome is all-cause hospital readmission within 14 days of discharge. Secondary outcomes are medical interventions and child health-related quality of life. Analyses will be conducted in an intention-to-treat manner, testing noninferiority of as-needed follow-up compared with automatic follow-up. FAAN-C will elucidate the relative benefits of an as-needed versus automatic follow-up recommendation, informing one of the most common decisions faced by families of hospitalized children and their medical providers. Findings from FAAN-C will also have implications for national quality metrics and guidelines.

Health-related quality of life and subjective well-being among children aged 9–12 years in Shandong Province, China

PurposeTo investigate the health-related quality of life (HRQoL) and subjective well-being (SWB) of children aged 9–12 years in eastern China, and examine concordance within child self-reported and parent proxy-assessed.MethodsData was collected from 9 to 12 years old children (including their parents) in Shandong Province in 2018. Participants self-completed a hard-copy questionnaire including Child Health Utility 9D (CHU9D), Pediatric Quality of Life Inventory (PedsQL)™ 4.0 Short Form 15 Generic Core Scales (hereafter the PedsQL™), Student’s Life Satisfaction Scale (SLSS), as well as information on socio-demographic characteristics and self-report health status. Spearman’s correlation coefficients and the difference between sub-groups were conducted to assess and compare the agreement on HRQoL and SWB instruments. Exploratory factor analysis (EFA) was used to ascertain the number of unique underlying latent factors that were associated with the items covered by the two generic HRQoL and the SWB instruments. The concordance of child self-reported and parent proxy-assessed was analyzed using weighted kappa coefficient and Bland-Altman plots.ResultsA total of 810 children and 810 parents were invited to participate in the survey. A valid sample of 799 (98.6%) children and 643 (79.4%) parents completed the questionnaire. The child self-reported mean scores were CHU9D = 0.87, PedsQL™ = 83.47, and SLSS = 30.90, respectively. The parent proxy-assessed mean scores were PedsQL™ = 68.61 and SLSS = 31.23, respectively. The child self-reported PedsQL™ was moderately correlated with the CHU9D (r = 0.52). There was a weak correlation between CHU9D and SLSS (r = 0.27). The EFA result found 3 factors whilst seven SLSS items grouped into a standalone factor (factor 3), and the nine dimensions of CHU9D shared two common factors with the PedsQL™ (factor 1 and factor 2). A low level of concordance was observed across all comparisons and in all domains (weighted kappa < 0.20) between parents and their children. Furthermore, a high level of discordance was observed between child self-reported and father proxy-assessed.ConclusionsCHU9D and PedsQL™ instruments have a higher agreement in measuring the HRQoL in children. CHU9D/PedsQL™ and SLSS instruments showed a low agreement and EFA result suggested that measuring SWB in children potentially may provide further information, which might be overlooked by using HRQoL instruments exclusively. Concordance of child self-reported and parent proxy-assessed was poor. Overall, mother-child concordance was higher than father-child concordance.

Changes in Correlates of Health-Related Quality of Life Between Children with Spina Bifida and Their Parents as Influenced by Their Level of Independence in Toileting Self-Management: A Cross-Sectional Study.

Background Spina bifida (SB) leads to various complications, such as bladder and bowel disorders, which can significantly impact quality of life (QOL). Parents of children with SB are often heavily involved in bladder and bowel management, which can affect their own QOL. Therefore, transitioning to independent bladder and bowel management is pivotal because it influences the QOL of both children with SB and their parents. In this study, we investigated changes in health-related quality of life (HRQOL) among children with SB and their parents in the process of attaining independence in bladder and bowel self-management. Methods Children with SB aged 8-17 years and their parents completed the Japanese version of the QOL assessment in SB for children/teenagers (QUALAS-C/T-J) and the Short Form-8 (SF-8). Independence in bladder and bowel management was assessed using a visual analogue scale (VAS). We calculated the correlation between children's or parents' HRQOL and the children's level of independence in bladder and bowel management. Additionally, we conducted a Mann-Whitney U test on the scores of the higher and lower independence groups. The correlation between parent and child HRQOL was analyzed by dividing children's independence into two groups. Results This study consisted of 83 parent-child pairs. Parents' and children's HRQOL and levels of self-management independence were not significantly correlated, either overall or by level of independence. The parent-child group with less independence, especially in bowel management, showed moderate to strong HRQOL correlations, whereas the group with more independence showed weaker correlations. Conclusions The strength of the correlation for parent-child HRQOL was found to change based on the level of independence in bladder and bowel self-management. These results suggest that the strength of parent-child cohesion tends to be pronounced in regard to the children's degree of independence in bowel management.

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 6 months 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. 28 ng/mL, respectively (P < 0.001)). After 6 months 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 6 months 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 6 months 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.