Health-related Quality Of Life In Children Research Articles

Validation of the dermatology-specific proxy instrument the Infants and Toddlers Dermatology Quality of Life.

The first dermatology-specific proxy health-related quality of life (HRQoL) instrument for children 0-4years old with skin diseases, the Infants and Toddlers Dermatology Quality of Life (InToDermQoL), was recently developed. In order to avoid the problem of cross-cultural inequivalence focus groups work and pilot tests were organized simultaneously in all national centres of the project. The InToDermQoL showed good comprehensibility, clarity and acceptance. To validate the InToDermQoL questionnaire during international field tests. Internal consistency, test-retest reliability, convergent and discriminant validity of the InToDermQoL questionnaire were checked during international field tests. Parents of 473 children with skin diseases filled in the national language versions of the InToDermQoL questionnaire. All three age-specific versions of the InToDermQoL questionnaire with 10, 12 and 15 items, respectively, showed high internal consistency (Cronbach's α 0.90-0.93), good test-retest reliability (correlation coefficients>0.9), significant correlations with the most widely used atopic dermatitis-specific proxy instrument, the Infants Dermatitis Quality of Life Index (correlation coefficients 0.68-0.79). The InToDermQoL versions for children <3years old well correlated with the atopic dermatis severity measure Scoring of Atopic Dermatitis (correlation coefficients 0.66 and 0.86 for 10 and 12 items versions, respectively). The InToDermQoL questionnaire discriminated well among different diagnoses and disease severity levels. Our field tests confirmed internal consistency, test-retest reliability, convergent and discriminant validity of the InToDermQoL questionnaire. Development and validation of the InToDermQoL questionnaire make it possible to assess dermatology-specific aspects of HRQoL in youngest children with skin diseases. There are many reasons to assess HRQoL in dermatologic clinical practice, and we hope that our new instrument will be used internationally in paediatric dermatology for research and practical needs.

Health-related quality of life in children with early-stage juvenile idiopathic arthritis.

Juvenile idiopathic arthritis (JIA) is a chronic inflammatory disease resulting in physical and psychological disability. This study aimed to measure the health-related quality of life (HRQOL) and identify factors influencing the HRQOL. We conducted a cross-sectional study in Thai children with JIA and their parents between January and December 2015, using the Thai version of the Pediatrics Quality of Life (PedsQL) 4.0 generic core scale. Sixty-five children (33 girls and 32 boys) were included. The median age of the children was 9.6 (interquartile range [IQR] 6.4-12.3) years and the median disease duration was 1.1 (IQR 0.2-2.2) years. The physical health subscale had the lowest score, with a median (range) of 78.1 (34.4-100). Twenty-five (45.4%) children were classified as having suboptimal HRQOL. The school functioning subscale had the lowest score, at 60 (25-100) reported by parents. High disease activity and a disease duration <1year were significantly associated with suboptimal HRQOL reported by parents, with adjusted odds ratios (ORs) of 20.2 (95% confidence interval [CI] 1.4, 291.7) and 5.9 (95% CI 1.2, 33.3), respectively. Almost half of Thai children with JIA had suboptimal HRQOL. The physical health score was the lowest subscale reported by the children. Early, effective management of disease activity could improve the HRQOL in children with JIA.

First-year predictors of health-related quality of life changes in short-statured children treated with human growth hormone.

Little attention has been directed towards examining the impact of predictors on change in health-related quality of life (HRQOL) within the course of growth hormone (GH) treatment in pediatric short stature. We aimed to assess changes in HRQOL and its sociodemographic, clinical and psychosocial predictors in children and adolescents diagnosed with growth hormone deficiency (GHD), and born short for gestational age (SGA) before and 12-month after start of GH treatment from the parents' perspective. Results were compared with an untreated group with idiopathic short stature (ISS). In this prospective multicenter study, 152 parents of children/adolescents (aged 4-18years) provided data on their children's HRQOL at baseline and at 12-month follow-up. Repeated-measures multivariate analyses of covariance were performed to examine parent-reported HRQOL changes from baseline to 1-year after treatment and hierarchical linear regressions to identify the predictors of HRQOL changes. Results showed that parents of children that were treated with GH report an increase in their children's HRQOL after 1year. Changes in HRQOL were mostly explained by psychosocial predictors followed by sociodemographic and clinical variables. Specifically, the diagnosis SGA significantly predicted a greater increase in parent-reported HRQOL. Furthermore, a lower caregiving burden significantly predicted a decrease in parent-reported HRQOL. In conclusion, a substantial percentage of explained variance in HRQOL relates to psychosocial and sociodemographic predictors. However, there appears to be other important factors that are predictors of HRQOL, which need to be determined in large, population-based samples.

Equity in functional and health related quality of life outcomes following injury in children - a systematic review

ABSTRACTInjury burden is greater in children from vulnerable and disenfranchised populations. This systematic review aimed to describe injury related Health Related Quality of Life (HRQoL) and function outcomes in children through a health equity lens. A systematic review was conducted focussed on HRQoL and functional outcomes in children (≤16 years) following injury. We applied PRISMA-E 2012 guidelines, the RTI (Research Triangle Institute) item bank for risk of bias and measured equity using PROGRESS-PLUS with a narrative synthesis. Of 3013 articles, 24 were eligible for inclusion. Most assessed outcomes following traumatic brain injury or burns over a 12-month period. Reduced functional and HRQoL levels pre-injury or baseline, longer hospitalisation, and lower socioeconomic status were linked to poorer long-term outcomes. Measures of equity in methodology, reporting and discussion were limited. Equity variables, such as prior disability, were points for participant exclusion. Ethnicity was often reported only in dominant cultural terms. The equity impact of injury in children remains largely unexplored. Worse injury outcomes were reported in low socioeconomic families, but the relationship to other equity variables was not routinely reported. This could significantly inhibit development of targeted preventative programs and health care for those most in need. Injury research agendas need reform, we provide guidance for research teams to assist in including equity in their research and outcomes.

Micronutrient deficiencies and health-related quality of life: the case of children with vitamin D deficiency.

To explore the extent to which micronutrient deficiencies (MND) affect children's health-related quality of life (HRQoL), using vitamin D deficiency (VDD) as a case study. Proxy valuation study to estimate the impact of VDD on the HRQoL of younger (0-4 years) and older (>4 years) children. We used the Child Health Utility 9 Dimension (CHU9D) questionnaire to estimate HRQoL for children within six VDD-related health states: 'hypocalcaemic cardiomyopathy', 'hypocalcaemic seizures', 'active rickets', 'bone deformities', 'pain and muscle weakness' and 'subclinical VDD'. Sampling was not restricted to any particular setting and worldwide experts were recruited. Respondents were paediatric bone experts recruited through network sampling. Thirty-eight experts completed the survey. The health state with the largest detrimental impact (mean score (se)) on children's HRQoL was hypocalcaemic cardiomyopathy (0·47 (0·02)), followed by hypocalcaemic seizures (0·50 (0·02)) and active rickets (0·62 (0·02) in young children; 0·57 (0·02) in older children). Asymptomatic VDD had a modest but noticeable negative impact on HRQoL, attributed mostly to tiredness in both age groups and pain in the older paediatric population. Elicitation of HRQoL from clinical experts suggests a negative impact of VDD on HRQoL, even if there is no recognizable clinical manifestation. HRQoL data from populations of patients with MND will inform public health policy decisions. In some settings, routine collection of HRQoL data alongside national nutrition surveys may help capture the full burden of MND and prioritize resources towards effective prevention.

Validation of the Greek version of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire.

Background The Quality of Life in Short Stature Youth (QoLISSY) questionnaire is a condition-specific instrument for measuring the health-related quality of life (HRQoL) in short statured children/adolescents from patients' and parents' perspectives. The aim of this study was to investigate the psychometric properties of the Greek version of the QoLISSY questionnaire. Methods The original European QoLISSY scales were translated into Greek following the guidelines for linguistic validation and applied to 184 dyads of children 8-18 years old and their parents, as well as to 14 parents of children 4-7 years old in Greece. The field testing responses to the Greek version of QoLISSY were analyzed. Results The qualitative analysis of the Greek data provided results consistent with the European sample. The subsequent field test showed acceptable internal consistency (Cronbach α between 0.67-0.93) and high test-retest reliability (intraclass correlation coefficients [ICC] ≥0.70). Correlations with the generic KIDSCREEN questionnaire indicated good convergent validity. Confirmatory factor analysis (CFA) also yielded acceptable results. Higher HRQoL for taller children suggests that QoLISSY was able to detect significant height-related differences. Conclusions The Greek version of the QoLISSY questionnaire is psychometrically sound and its use is recommended in further clinical research to ascertain the impact of short stature (SS) and treatments in Greek children/adolescents and families.

Health related quality of life of infants and children with avoidant restrictive food intake disorder.

ObjectiveThe aim of this study was to compare health related quality of life (HRQOL) in infants and children with avoidant restrictive food intake disorder (ARFID) to healthy and chronically ill controls.MethodA cross‐sectional study was conducted in children who meet ARFID criteria at our tertiary care pediatric feeding clinic (September 2014 to July 2016). Before consultation, parents of patients (n = 100) were asked to complete questionnaires to determine HRQOL: the TNO‐AZL Preschool Children Quality of Life (0–5 years), and “Pediatric Quality of Life Inventory” (6–7 and 8–10 years). HRQOL of ARFID patients was compared to both healthy (0–5 years n = 241; 6–7 years n = 61; 8–10 years n = 192) and chronically ill (0–5 years n = 79; 6–7 years n = 11; 8–10 years n = 26) controls.ResultsThe prevalence of ARFID was 64%. HRQOL of ARFID patients aged 0–5 years (n = 37) was significantly lower on 6/12 scales (appetite, lungs, stomach, motor functioning, positive mood and liveliness) compared to healthy controls (P < .01), and on 4/12 scales (appetite, stomach, motor functioning, and liveliness) compared to chronically ill controls (P < .01). The ARFID patients scored significantly better on the problem behavior scale compared to healthy and chronically ill controls (P < .01). ARFID patients aged 6–7 (n = 9) had significantly lower scores in 3/6 scales (total score, psychosocial health, and school functioning) (P < .01), and aged 8–10 (n = 2) had a significantly lower school functioning scale (P < .01) compared to healthy controls.ConclusionHRQOL of children with ARFID is decreased on multiple scales. The effect on HRQOL should be incorporated in clinical practice, and clinical studies should add HRQOL as an outcome measure.

Health-related quality of life among children, adolescents, and adults with bladder exstrophy-epispadias complex: a systematic review of the literature and recommendations for future research.

Bladder exstrophy-epispadias complex (BEEC) is a rare spectrum of genitourinary malformations. Children risk long-term urinary and genital dysfunctions. To achieve a comprehensive understanding, this study aimed to review the literature on generic and disease-specific health-related quality of life (HRQOL) in BEEC patients, and methodologies used. A literature search was conducted in Pubmed/CINAHL/Embase/PsycINFO/Cochrane, from inception to May 2018. A meta-analysis of HRQOL in BEEC patients compared to healthy references was performed. Twenty-one articles (published 1994-2018), describing HRQOL of children and adolescents (n = 5) and adults only (n = 5), or integrated age populations (n = 11), were identified (median sample size 24, loss to follow-up 43%, response rate 84%). Overall HRQOL was reduced in BEEC patients compared to healthy references in 4/4 studies. Impaired physical or general health in BEEC patients has been described in 9 articles, diminished mental health in 11, restricted social health in 10, and sexual health/functioning or body perception impairments in 13 articles. Urinary incontinence was the most common factor related to worse HRQOL (12 studies). In six studies, HRQOL was better than healthy norms. In eligible studies (n = 5), the pooled estimate of the effect of BEEC indicated worse HRQOL for children and adults (0 > effect sizes < 0.5). Thirty-six HRQOL assessments were used, none developed and validated for BEEC. HRQOL in BEEC patients may be negatively impacted, particularly considering mental and social HRQOL. Sexual health/functioning or body perception impairments may be present in adolescents and adults. However, HRQOL is heterogeneously assessed and subsequent findings are differently reported. Additional research is warranted and can be improved.

Minimal Associations Between Clinical Data and Children's Self-Reported Health-Related Quality of Life in Children With Chronic Conditions—A Cross-Sectional Study

Introduction: The improvement—or at least maintenance—of health-related quality of life (HRQoL) in children and adolescents is one of the main aims of chronic disease care. This study examines HRQoL of children and adolescents with three different chronic conditions (i.e., diabetes mellitus, asthma, juvenile arthritis) using the computer-adaptive test Kids-CAT, comprising five HRQoL domains: physical well-being, psychological well-being, parent relations, social support and peers, and school well-being. Further, associations between HRQoL and distinct clinical data and medical assessments are investigated to explore how much variability of the five domains can be explained by these variables.Methods: Cross-sectional data of the Kids-CAT study was analyzed. The Kids-CAT was used in two outpatient clinics in northern Germany gathering data on self-reported HRQoL in n = 309 children and adolescents aged 7–17 years. Additionally, general patient information, clinical data, and pediatrician-reported medical assessments were measured. Multiple regression analyses were conducted to explore associations between HRQoL and selected variables (i.e., disease duration, co-morbidity, disease control, overall health status).Results: Overall, self-reported HRQoL in all five domains were comparable to data of an age- and sex-matched reference population. Results of regression analyses indicated that the investigated variables only minimally explain variance in the five Kids-CAT domains. Sociodemographic, clinical data, and medical assessments explained 18.4% of the variance in physical well-being, 10.7% in psychological well-being, and < 10% of the variance in parent relations, social support and peers, and school well-being.Conclusion: Sociodemographic data, disease duration, co-morbidity, and medical assessments, such as disease control or pediatrician-assessed overall health status show low association with HRQoL of children and adolescents with chronic conditions. Data on self-reported HRQoL delivers valuable information on children's well-being and can improve healthcare professionals' understanding of the subjective well-being of their young patients. The implementation of tools like the Kids-CAT can facilitate the identification of potential problem areas, which should enable healthcare professionals to better address specific healthcare needs.Clinical Trial Registration: identifier: DRKS00006326 (retrospectively registered); Date of registry: August 1st, 2014.

Testing competing mediators of the association between pre-conception maternal depression and child health-related quality of life: the MatCH study.

Maternal depression is a potent risk factor for poor child development across a number of domains but the mechanisms of transmission are poorly understood. This study aimed to test competing mediators of the association between pre-conception maternal depression and child psychosocial functioning. In 2016, mothers in the 1973-1978 cohort of the Australian Longitudinal Study on Women's Health were asked to be part of the Mothers and their Children's Health study and to complete surveys on the health of their three youngest children under 13years. The current study includes children aged 0-12years (N = 5532, M = 6.99years, SD = 3.22years) and their mothers (N = 2917). We used the CESD-10 to measure depression and the PedsQL to measure psychosocial functioning, and used multilevel structural equation modeling to test hypotheses. Pre-conception maternal depression was associated with poorer maternal mental health and parenting after birth. The effect of pre-conception maternal depression was mediated by post-birth maternal depression in children aged 0-4years (unstandardized regression coefficient (B) = - 0.26, 95%CI - 0.38, - 0.13) and children aged 5-12years (B = - 0.25, 95%CI - 0.34, - 0.16), and by post-birth maternal stress (B = - 0.04, 95%CI - 0.08, - 0.01), and parenting (B = - 0.03, 95%CI - 0.04, - 0.02) in children aged 5-12years. Post-birth maternal depression was the strongest mediator. Pre-conception is the optimal time for depression intervention. Post-birth interventions should include a focus on reducing depression and improving negative parenting aspects such as hostility and discipline.

Health-related quality of life and its influencing factors in children with β-thalassemia major and their parents

Objective To evaluate the health-related quality of life (HRQoL) in children with β-thalassemia major and their parents, and to analyze its affecting factors. Methods PedsQL™ 4.0 generic core scale and a demographic questionnaire were used to assess HRQoL in 45 children with β-thalassemia major and their parents, which were between 5 and 12 years old, had received blood transfusion in Chengdu Women and Children′s Central Hospital during 2016. Results The total summary score of patients′ HRQoL was (74.58±7.29) score, in which, the social functioning subscale score was the highest, and school functioning subscale score was the lowest.The total summary score of parents′ HRQoL was (64.43±11.54) score, and the difference was statistically significant(P 0.05). A multiple regression analysis revealed that the HRQoL of children with β-thalassemia major was significantly correlated with onset age of anemia(P=0.005), Hb level before transfusion(P=0.026)and iron chelation therapy(P=0.000). Conclusions The HRQoL of children with β-thalassemia major and their parents were remarkably low.Comprehensive programs including social support, medical service and psychological care should be provided for these children and their parents. Key words: β-thalassemia major; Child; Quality of life

Health-related quality of life in children and adolescent with ASD: the role of mothers' emotional symptoms

Objective: Health-related quality of life (HRQOL) in children with autism spectrum disorder (ASD) has been the subjects of many studies. However, there is limited literature about the effects of parental mental health problems on the HRQOL of children with ASD. This study aims to compare HRQOL of ASD children and their mothers’ emoti-onal problems with healthy controls and to investigate the associations between ASD children’s HRQOL and mater-nal psychiatric symptoms. Methods: The sample consisted of 81 ASD patients and 79 healthy controls, with an age range of 2-18 years, and an equal number of mothers. Childhood Autism Rating Scale was used to check severity of autistic symptoms, Kinder Lebensqualitatsfragebogen: Children’s Quality of Life Questionnaire-revised (KINDL-R) was used to examine child HRQOL, Beck Depression Inventory (BDI) was used to evaluate maternal depressive symptoms, and State-Trait Anxiety Inventory (S-STAI, T-STAI) was used to assess maternal anxiety symptoms. Results: BDI and T-STAI total scores were significantly higher, KINDL-R total score, physical well-being, family, social, and school subscores were significantly lower in children with ASD than the control group. BDI total score was significantly higher, self-esteem and social subscores of KINDL-R were significantly lower in the severe ASD group. Self-esteem and school subscores of KINDL-R were significantly lower in ASD children with clinically anxious mothers. Among ASD children, family and school subscores of KINDL-R were negatively corre-lated with BDI total score. Conclusions: ASD patients have lower HRQOL than typically developing peers. Mothers of ASD children experience greater anxiety and depressive symptoms. Self-esteem and school performance in ASD children appear to be linked with maternal anxiety symptoms. Family and school problems in ASD children may be associated with maternal depressive symptoms.

Parent-Reported Diabetic-Specific Health Related Quality of Life in Children Treated with Multiple Daily Injection, Continuous Subcutaneous Insulin Infusion and Flexible Multiple Daily Injection: A Comparative Study

Aims: This study aims to identify differences in diabetes specific health related quality of life (HRQoL) in children and adolescents with type 1 diabetes mellitus (T1D) treated with three distinct types of intensive insulin therapy-multiple daily injection (MDI), continuous subcutaneous insulin infusion (CSII) and flexible multiple daily injection (fMDI). Materials and Methods: This survey was conducted in north west Tasmania over a 6-month period, during quarterly clinic visits. A well-known, reliable and validated survey tool -<i>Paediatric Quality of life (PedsQL) Diabetes Module 3.0</i> was used to capture information about the diabetic specific HRQoL in children and adolescents. The parent-proxy version of the forms was completed by the parents electronically using iSurvey application to secure information regarding their children’s diabetes related symptoms (11 items), treatment barriers (4 items), treatment adherence (7 items), worry (3 items) and communication (3 items). All de-identified information was downloaded into an excel spreadsheet and SPSS V24.0 for further analysis. Results: 34 parents completed the electronic data forms on <i>iSurvey</i>. There were no statistically significant differences in HRQoL among the CSII, MDI and fMDI groups as determined by one-way ANOVA in diabetes {<i>F</i> (2, 31) = 0.517, <i>p</i> = 0.601}, treatment {<i>F</i> (2, 31) = 0.385, <i>p</i> = 0.684}, worry {<i>F</i> (2, 31) = 0.076, <i>p</i> = 0.927}, and communication {<i>F</i> (2, 31) = 0.672, <i>p</i> = 0.518}. Conclusion: Although, the impact of T1D on the HRQoL in children and adolescents is higher than the children without T1D, it appears to be independent of the types of three intensive insulin therapy generally used- CSII, MDI and fMDI, suggesting type of insulin therapy may not be the major influencing factor for children’ quality of life as revealed in this first of its kind study. A further study with higher number of participants and the additional impact of various glucose monitoring systems on the HRQoL is highly recommended, which may influence the decision of right therapy suitable for the entire family.

The Effect of a Yoga Program on "Health-Related Quality of Life" of Children in Residential Care Centers

Abstract Introduction: Children living in residential care centers are a vulnerable population and have a lower Health-Related Quality of Life (HRQOL). This study explored a yoga exercise program on HRQOL in children living in residential care centers. Methods: In this quasi-experimental, one group before-after study with time series design, all children aged 8 to 13 years, who qualified for inclusion criteria and were living in governmental residential care centers of Isfarayen were selected, using census method. The participants took part in yoga classes for 8 weeks. The HRQOL was assessed using Kids Screen Health-related Quality of Life Questionnaire (KS-HRQOLQ). The gleaned data were analyzed with SPSS21 using repeated measurements analysis. Results: Changes in total score of HRQOL obtained in five measurements were not statistically significant (P = 0.270). Variations in score of HRQOL in dimensions of mental well-being, the relations with parents and self-autonomy, social support and peers, and school environment were not significant before to one month after completion of interventions (P = 0.29, P = 0.67, P = 0.16, P = 0.50, respectively). For physical well-being dimension, changes were significant frombefore to immediately after completion of interventions (P = 0.013). Changes were not significant in presence of personal and demographic variables (P = 0.45, P > 0.05). Conclusions: This study indicated that yoga increases life quality only in physical well-being dimension. Given that life quality reflects wishes, expectations, and hopes of children and teenagers in relation to their present and future life and this feeling is time-related, culture-dependent, and context-oriented, it appears that life conditions of children in current study and chronic continuous tension present in residential care centers probably made effects of yoga different.

Health-related quality of life in children with chronic immune thrombocytopenia treated with eltrombopag in the PETIT study.

The PETIT (Eltrombopag in Pediatric Patients with Thrombocytopenia from Chronic ITP) trial showed that in children aged 1-17years with chronic or persistent immune thrombocytopenia (ITP), eltrombopag improved platelet counts, decreased clinically significant bleeding and reduced rescue medication need. We report the health-related quality of life (HRQoL) results from the PETIT study using the Kids' ITP Tools (KIT). A limitation was that PETIT was not powered for the HRQoL analysis. Eltrombopag did not impact children's HRQoL assessed by the KIT. Although median KIT scores in children treated with eltrombopag with platelet responses were numerically higher compared with non-responders in some age groups, the interquartile ranges overlapped.

Fatigue in pediatric liver transplant recipients and its impact on their quality of life.

The aim of the study was to investigate the occurrence of fatigue in 100 pediatric liver transplant recipients aged 2-18years and its impact on their health-related quality of life (HRQL). HRQL and fatigue were measured using the PedsQL 4.0 Inventory and the PedsQL Multidimensional Fatigue Scale, which encompasses three subscales: general fatigue, sleep/rest fatigue, and cognitive fatigue. The impact of the different domains of fatigue and of clinical and sociodemographic factors on the HRQL was identified with stepwise multiple regression analyses. Parent proxy-reports were available for all 100 participants (2-18years), and child self-reports were available for 71 patients (8-18years). Across all domains, participants and their parents reported significantly more fatigue than healthy peers in a large PedsQL validation study. Thirty-seven percent of patients and 57% of parents scored clinically relevant levels of fatigue. In the multiple regression analyses, none of the clinical and sociodemographic factors contributed to the HRQL for child self-report. Only general and cognitive fatigue were significant predictors of patients' HRQL, explaining 66% of the variance in the PedsQL total score. For parent proxy-report, general and cognitive fatigue also significantly predicted child's HRQL. Further predictors were child's age and family income. The regression model explained 65% of the variance. These findings demonstrate the importance of assessing fatigue during regular follow-up examinations. Further research is urgently needed to better understand the underlying mechanisms of fatigue. Improvement of fatigue symptoms is essential for better HRQL, for cognitive functioning, and for school achievement.

Quality of life following surgery for congenital glaucoma: findings of the LVPEI congenital glaucoma registry.

To evaluate the health-related quality of life (HRQoL) of children operated for primary congenital glaucoma (PCG) using the Kidscreen-27 questionnaire. A total of 121 children (mean age, 11.8 years; SD, 2.8 years; 51% males) with unilateral or bilateral PCG who underwent glaucoma surgery in infancy (mean duration since surgery, 10.2 years; [SD] 4.2 years) by a single surgeon at a tertiary eye care centre were administered the Kidscreen-27 questionnaire (self-or interviewer administered in a face-to-face interview) during their routine follow-up visit. We investigated the measurement properties of Kidscreen-27 questionnaire using Rasch analysis and generated interval-level estimates of HRQoL. The main outcome measure was HRQoL (i.e., Rasch-derived Kidscreen score). Multivariable linear regression analyses assessed the influence of socio-demographic and clinical variables on the HRQoL of children with PCG. Majority (83%) of the children had bilateral PCG and congenital type of the disease (79%). Mean presenting acuity (logMAR) in the better eye was 0.32 (SD, 0.36; median, 0.18). Rasch analysis of Kidscreen-27 questionnaire indicated need for minor modifications following which a psychometrically robust unidimensional 23-item Kidscreen questionnaire emerged. In multivariable model, age of the child was independently associated with a 32% (β = -0.24 [95% CI, -0.11, -0.36]) increase in the HRQoL score. Despite undergoing successful glaucoma surgery, children with PCG reported reduced HRQoL. Younger children with PCG are more likely to experience this lowered HRQoL and ophthalmologists will need to be alert to this. Efforts must be made to improve the HRQoL of children with PCG.

HEALTH-RELATED FAMILY QUALITY OF LIFE WHEN A CHILD OR YOUNG PERSON HAS A DISABILITY

Parents of a child or young person with disability face not only the same challenges as parents of typically developing children and young people, but also the extra challenges of supporting the child or young person with disability in such a way as to maximise both their own quality of life (QOL) and family quality of life (FQOL) for all family members. Health-related quality of life (HRQOL) encompasses not only physical health but also mental and emotional health, equally important for FQOL. This article builds on information from previous publications, and illustrates relevant issues and the innovative methods parents, caregivers, and professionals have devised to enhance the HRQOL for children and young people with disability, and to improve FQOL. The author draws upon her personal lived experiences of having two daughters, the eldest an adult with disability, as well as being the medical consultant and manager of a newly created health unit tasked with supporting students with disability, who often have high health needs, in educational settings. The health conditions selected are those that have a major impact, not only on the young person with disability but also on family members. Vignettes, all deidentified true stories, will be included to illustrate the multiple issues faced by children and young people with disability, their families and extended families, and treating clinicians. These stories will hopefully resonate with families in particular.

Comparison of health-related quality of life (HRQoL) among healthy, obese and chronically ill Iranian children

BackgroundHealth-related quality of life (HRQoL) has frequently been compared between both healthy and obese children and healthy and chronically ill children; however, there is glaring lack of evidence regarding comparison of HRQoL in obese children with their counterparts with chronic diseases. Therefore, this study aimed to compare HRQoL among healthy, obese and chronically ill children.MethodsThis cross sectional study was conducted among 802 children (8–12 years) who were recruited via convenience sampling method. Participants were 98 healthy, 102 obese and 602 chronically ill children with six groups of chronic conditions including different types of cancer, rheumatoid arthritis, chronic gastrointestinal, kidney, neurologic and respiratory diseases. HRQoL was assessed using the Iranian version of the PedsQL questionnaire and both reports including child self-report and parent proxy-report were obtained. To compare subscales and total scores of HRQoL among healthy, obese and six groups of chronically ill children, the general linear model was used.ResultsMean self-reported HRQoL total scores were 73.7 ± 13.3 and 74.6 ± 11.8 in girls and boys respectively; based on the parents’ reports, mean HRQoL total scores were 71.6 ± 15.4 and 71.4 ± 13.0 in girls and boys respectively. From the prespectives of both children and parents, HRQoL total score was significantly lower in obese girls compared to both healthy girls and girls with chronic gastrointestinal, kidney, neurologic and respiratory diseases. Considering both children’s and parents’ reports, HRQoL total score was significantly lower in obese boys compared to both healthy boys and boys with chronic respiratory diseases. In terms of subscales of HRQoL, the impairment of HRQoL in obese children, compared to their counterparts with other chronic diseases, was more common in social functioning and physical functioning subscales, specifically in girls.ConclusionObese children reported poorer HRQoL compared to their healthy counterparts, as well as their counterparts with chronic diseases. Current findings emphasize the important impact of childhood obesity on the perceived health of these children, particularly in the social dimension, underscoring thereby the designing, planning and implementation of health promotion programs for prevention and treatment of childhood obesity.

Health-related quality of life in children after burn injuries: A systematic review.

Through improved survival of burns, more children have to deal with consequences of burns. Health-related quality of life (HRQL) measurement is important to qualify the perceived burden of burns in children. No systematic study of this outcome in children exists. Therefore, our objective was to review study designs, instruments, methodological quality, outcomes, and predictors of HRQL in children after burns. A systematic literature search was conducted in CINAHL, Embase, Google Scholar, Medline, The Cochrane library, and Web of science (PROSPERO ID, CRD42016048065). Studies examining HRQL in pediatric burn patients were included. The risk of bias was assessed using the Quality in Prognostic Studies (QUIPS) tool. Twenty-seven studies using 12 HRQL instruments were included. The Burns Outcome Questionnaire aged 0 to 4 and 5 to 18 years were most often applied. All longitudinal studies showed improvement of HRQL over time. However, problems were reported on the longer term on the domains "(parental) concern" and "appearance." Parental proxy scores were in general comparable to children's self-ratings. Severity of burns, facial burns, hand burns, comorbidity, and short time since burn predicted an impaired HRQL. The risk of bias of the studies was, in general, moderate. Health-related quality of life in children after burns increases over time. Domains and patient groups that require special attention are identified. However, due to lack of comparability of studies, the available information could not be used optimally. To further improve our understanding of HRQL, consensus on design, data-analysis, and data presentation are needed. Systematic review, level III.