Parent-reported Quality Of Life Research Articles

Parental perspectives on the quality of life of children with Down syndrome

Down Syndrome (DS) is the most common chromosome abnormality and the most frequent cause of developmental delay/intellectual disabilities in children. Although the investigation of the quality of life (QoL) is crucial in children with DS, relatively poor attention has been paid to this topic. The current study aimed to evaluate parent-reported QoL in a group of children with DS and identify children's individual and clinical features associated with different levels of QoL. We included in the study 73 children with DS (5–12 years) and investigated the parent-reported levels of QoL by means of the Pediatric Quality of Life Inventory. Cognitive level and the presence of behavioral difficulties were also evaluated. The overall parent-reported QoL of children with DS was high; emotional functioning was the domain with the highest level of QoL. Moreover, parents perceived low levels of QoL in children who exhibited low IQ, worse analogical reasoning, worse adaptive skills, more frequent challenging behaviors, more ritualistic/sameness behavior and more autistic symptoms. No differences emerged for family variables, namely parental education and employment, between the two groups with high and low QoL, as perceived by parents. The understanding of cognitive and behavioral factors - such as analogical reasoning, socio-communication abilities and challenging behaviors - related with different degrees of QoL in children with DS is crucial for the development of effective strategies to promote the improvement of the QoL.

Child, Parent, and Family Adjustment for Patients Followed in a Multidisciplinary Spina Bifida Clinic.

To characterize child, parent, and family adjustment for patients followed in a multidisciplinary spina bifida (SB) clinic. Participants were drawn from clinical cases seen through a multidisciplinary outpatient SB clinic at a children's hospital between 2017 and 2019. Participants included 209 youth under 19 years old who were diagnosed with SB and their parents. Self-reported internalizing symptoms were measured in youth in grade 3 through 12 using the 25-item Revised Children's Anxiety and Depression Scale-25 (RCADS-25). Self- and parent-reported quality of life and family functioning were obtained using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and Family Impact Modules. A total of 45.7% of children and adolescents reported at-risk psychosocial functioning on the PedsQL. In contrast, only 5% of patients reported clinically elevated internalizing symptoms on the RCADS. Parents' quality of life and family functioning in the study were higher than in most studies of parents of children with other chronic health conditions, children with attention deficit-hyperactivity disorder, and healthy control samples. Our findings indicate that children and adolescents with SB are at risk for poor health-related quality of life (HRQOL); however, poorer HRQOL may not necessarily be associated with more severe psychiatric symptoms in this population. Examining resilience factors that may help to buffer against challenges to HRQOL will be important in informing future interventions.

Predictors of Functional School Outcome in Children With Pediatric Acquired Brain Injury.

ObjectiveAmong the variety of domains that may be impacted after pediatric acquired brain injury (pABI) are functional school outcomes. The purpose of this study was to identify demographic, medical, and psychological factors associated with impairments in functional school outcomes, defined as school absence, need of educational and psychological services, quality of life (QoL) in the school setting, and academic performance in children with pABI, with a specific emphasis on the significance of fatigue.Materials and MethodWe used baseline data from a randomized controlled trial. The sample consisted of seventy-six children aged 10 to 17 (M = 13 yrs) with pABI in the chronic phase (>1 year). All completed assessments of school-related QoL, academic performance, global functioning, fatigue, IQ, behavioral problems, and executive function.ResultsFatigue, IQ, global functioning, behavioral problems, and sex emerged as potential predictors for functional school outcomes. Of note, overall fatigue emerged as the strongest potential predictor for parent-reported QoL in school (β = 0.548; p < 0.001) and self-reported QoL in school (β = 0.532; p < 0.001).ConclusionsFollowing pABI, specific psychological, medical, and demographic factors are associated with functional school outcomes. Neither of the injury-related variables age at insult and time since insult were associated with functional school outcomes. Overall, our findings may suggest that a reintroduction to school with personalized accommodations tailored to the child's specific function and symptoms, such as fatigue, is recommended.

Quality of Life of Children Born with a Congenital Heart Defect

To identify subgroups with a congenital heart defect (CHD) at risk of health-related quality of life (QoL) impairment at 8years of age according to their medical and surgical management. From a prospective population-based cohort study, 598 patients with CHD were subdivided according to their medical and surgical management: (1) CHD followed-up in an outpatient clinic, (2) complete repair before age 3years, (3) complete repair after age 3years, (4) palliative repair, or (5) CHD with spontaneous resolution (reference subgroup). Self-reported QoL and parent-reported QoL were measured using the Pediatric Quality of Life Inventory version 4.0 (score range, 0-100) at age 8years. Multivariable regression analysis and Cohen effect size were used to compare outcomes across the CHD groups. Self-reported and parent-reported QoL scores for the palliative repair subgroup were lower (β=-2.1 [95% CI, -3.9 to -0.2] and β=-16.0 [95% CI, -22.4 to -9.5], respectively), with a large effect size (δ=-0.9 [95% CI, -1.4 to -0.4] and δ=-1.3 [95% CI, -1.8 to -0.7], respectively). Parent-reported QoL scores for the complete repair after age 3years subgroup were lower (β=-9.2; 95% CI, -15.0 to -3.5), with a large effect size (δ=-0.9; 95% CI, -1.4 to -0.5). Self-reported QoL scores for the complete repair before age 3years subgroup was lower (β=-1.3; 95% CI, -1.9 to -0.6), with a small effect size (δ=-0.4; 95% CI, -0.6 to -0.2). The QoL of children with CHD who experienced a hospital intervention is reduced at age 8years. Patient age at the last cardiac intervention might influence QoL at 8years.

Repeated measures discriminant analysis using multivariate generalized estimation equations.

Discriminant analysis procedures that assume parsimonious covariance and/or means structures have been proposed for distinguishing between two or more populations in multivariate repeated measures designs. However, these procedures rely on the assumptions of multivariate normality which is not tenable in multivariate repeated measures designs which are characterized by binary, ordinal, or mixed types of response distributions. This study investigates the accuracy of repeated measures discriminant analysis (RMDA) based on the multivariate generalized estimating equations (GEE) framework for classification in multivariate repeated measures designs with the same or different types of responses repeatedly measured over time. Monte Carlo methods were used to compare the accuracy of RMDA procedures based on GEE, and RMDA based on maximum likelihood estimators (MLE) under diverse simulation conditions, which included number of repeated measure occasions, number of responses, sample size, correlation structures, and type of response distribution. RMDA based on GEE exhibited higher average classification accuracy than RMDA based on MLE especially in multivariate non-normal distributions. Three repeatedly measured responses namely severity of epilepsy, current number of anti-epileptic drugs, and parent-reported quality of life in children with epilepsy were used to demonstrate the application of these procedures.

Higher Child-Reported Internalizing and Parent-Reported Externalizing Behaviors were Associated with Decreased Quality of Life among Pediatric Cardiac Patients Independent of Diagnosis: A Cross-Sectional Mixed-Methods Assessment

Background: Pediatric cardiology patients often experience decreased quality of life (QoL) and higher rates of mental illness, particularly with severe disease, but the relationship between them and comparisons across diagnostic groups are limited. This mixed-methods cross-sectional study assessed the association between QoL anxiety and behavior problems among children with structural heart disease, arrhythmia, or other cardiac diagnoses. Methods: Children (6–14 years, n = 76, 50% female) and their parents completed measures of QoL (PedsQL), behavior (BASC-2, subset of 19 children) and anxiety (MASC-2, children 8+ years). Pearson correlations/regression models examined associations between QoL, behavior and anxiety, controlling for age, sex, diagnosis and condition severity. Student t-tests compared results to published normative values. Semi-structured interviews (15 children, 13 parents) examined self- and parent-reported perceptions of the patient’s emotional health. Results: Child reported social QoL (95% CI difference: −11.0, −2.1), emotional well-being (95% CI difference: −12.5, −3.8) and adjustment skills (95% CI difference: −13.9, −3.0) were significantly below published norms (p < 0.05). Neither age, sex, nor diagnosis were significantly related to questionnaire responses. Compared to children with mild conditions, child and parent-reported QoL was significantly lower in children with complex conditions (np2 ≥ 0.14, p < 0.05). Lower QoL was strongly associated with more internalizing problems based on both child (r = −0.78, p < 0.001) and parent (r = −0.67, p < 0.001) reports. Interview responses suggested emotional distress was attributed to “normal” child problems rather than the child’s cardiac problem. Conclusion: Children with complex cardiac conditions, regardless of diagnosis, had diminished QoL. Using the PedsQL in clinical settings may help identify pediatric cardiology patients experiencing emotional distress (i.e., anxiety and depression).

Clinical Hypnosis in Pediatric Crohn's Disease: A Randomized Controlled Pilot Study.

The aim of this study was to implement clinical hypnosis (CH) as an adjunctive therapy for adolescents with Crohn's disease (CD) and to assess the impact of CH on quality of life (QoL), abdominal pain, psychosocial measures, and disease activity compared with standard care. Forty adolescents with CD were randomized to a hypnosis intervention (HI) or waitlist control (WC) group. The intervention consisted of 1 in-person CH session, self-hypnosis education, and recordings for home practice. Data was collected at baseline, after the 8-week intervention, and at week 16. The primary outcome was patient- and parent-reported QoL; secondary outcomes were patient-reported abdominal pain, depression, anxiety, and sleep; school absences; and disease activity by Pediatric Crohn's Disease Activity Index. Paired and independent t-tests were used to compare differences from baseline to postintervention within and between groups. Forty patients (50% girls, mean 15.8 years) were enrolled from February to May 2019. Seventy-eight percent had inactive disease, and 55% had abdominal pain. Post intervention, significant improvements were noted in HI parent-reported QoL compared with WC in total score (P = 0.05), social functioning (P = 0.01), and school functioning (P = 0.04) but patient-reported QoL was unchanged. Abdominal pain severity significantly improved in HI compared with WC (P = 0.03). School absences decreased in significantly more intervention than control patients (P = 0.01). Patients who practiced self-hypnosis consistently showed a trend toward greater QoL improvement than those who did not (P = 0.1). CH is an acceptable and feasible adjunct in CD and may improve psychosocial QoL and abdominal pain. Further research is warranted.

Comparing Quality of Life and Perceptual Speech Ratings in Children With Cleft Palate.

To delineate the relationship between patient and parent-reported quality of life (QOL) ratings and perceptual characteristics of speech assigned by a speech-language pathologist (SLP) in children with repaired cleft palate. Prospective. Academic Children's Hospital. This population-based sample included children, aged 3 to 18 with a history of repaired cleft palate, and their parents. Participants completed the Velopharyngeal Insufficiency Effects on Life Outcomes Questionnaire (VELO). Children's speech was judged perceptually by an expert SLP using the Pittsburgh Weighted Speech Scale (PWSS). Velopharyngeal Insufficiency Effects on Life Outcomes questionnaire assessed participant and parent perceptions of impact of velopharyngeal function on QOL. Pittsburgh Weighted Speech Scale assessed nasal emissions, facial grimacing, nasality, quality of phonation, and articulation. Enrollment included 48 participant parent dyads. Overall, participants reported high QOL scores within the 95% CI with children reporting slightly better yet not significantly different QOL (86.27 ± 8.96) compared to their parents (81.81 ± 15.2). Children received an average score of 1.38 ± 1.96 on the PWSS corresponding to borderline velopharyngeal competence. A significant moderate negative correlation was found between PWSS total score and parent VELO total score (r = -0.51103, P = .0002). Mild-moderate significant negative correlations were measured between PWSS total and the 5 subscales of the VELO. No significant correlations were measured between PWSS and child VELO total responses or between total scores and subscales. Results suggest that as perceptual analysis of speech improves, overall QOL improves moderately.

Transmitted Home Oximetry and Duration of Home Oxygen in Premature Infants.

To determine if a home oxygen therapy (HOT) management strategy that includes analysis of recorded home oximetry (RHO) data, compared with standard monthly clinic visit assessments, reduces duration of HOT without harm in premature infants. The RHO trial was an unmasked randomized clinical trial conducted in 9 US medical centers from November 2013 to December 2017, with follow-up to February 2019. Preterm infants with birth gestation ≤37 + 0/7 weeks, discharged on HOT, and attending their first pulmonary visit were enrolled. The intervention was an analysis of transmitted RHO between clinic visits (n = 97); the standard-care group received monthly clinic visits with in-clinic weaning attempts (n = 99). The primary outcomes were the duration of HOT and parent-reported quality of life. There were 2 prespecified secondary safety outcomes: change in weight and adverse events within 6 months of HOT discontinuation. Among 196 randomly assigned infants (mean birth gestational age: 26.9 weeks; SD: 2.6 weeks; 37.8% female), 166 (84.7%) completed the trial. In the RHO group, the mean time to discontinue HOT was 78.1 days (SE: 6.4), compared with 100.1 days (SE: 8.0) in the standard-care group (P = .03). The quality-of-life scores improved from baseline to 3 months after discontinuation of HOT in both groups (P = .002), but the degree of improvement did not differ significantly between groups (P = .75). RHO was effective in reducing the duration of HOT in premature infants. Parent quality of life improved after discontinuation. RHO allows physicians to determine which infants can be weaned and which need prolonged oxygen therapy between monthly visits.

Parental Perspectives on Quality of Life in Adolescents with Cerebral Palsy.

Background:Quality of life (QoL) is an important outcome variable while evaluating intervention effectiveness during adolescence. Limited studies have addressed the issues that affect the QoL in adolescents with cerebral palsy. The present study explores the parent-reported QoL in adolescents with cerebral palsy.Materials and Methods:Using a cross-sectional study design, parental perspectives on QoL were investigated among 35 parents of adolescents with cerebral palsy, aged between 13 and 18 years. Performance on seven domains of QoL across age and gender were explored.Results:While the maximum QoL was seen in the domain of social well-being, the least QoL was noted for feelings about functioning. Across age, the early adolescence group (13–15 years) had a poorer quality of life in comparison to the late adolescence group (16–18 years). With respect to the gender, though females had a lower QoL scores, a statistically significant difference was observed only for the domain of general well-being and participation.Conclusions:From a parental perspective, the major issues of concern in adolescents with cerebral palsy were feelings about functioning, general well-being and participation, and access to services. This information will be useful when establishing management options or assessment protocols to improve their overall QoL.

P039 CLINICAL HYPNOSIS IN PEDIATRIC CROHN’S DISEASE: A RANDOMIZED CONTROLLED TRIAL

Abstract Background Crohn’s disease (CD) is a chronic, immune-mediated condition associated with abdominal pain, psychological comorbidities, and reduced quality of life (QoL), even in remission. Clinical hypnosis, involving focused relaxation and therapeutic suggestion, is helpful for irritable bowel syndrome, pain, and anxiety, and may have anti-inflammatory effects. Study Aims: To implement hypnosis as an adjunctive therapy for adolescents with CD. To assess the impact on QoL, abdominal pain, psychosocial measures, and disease activity compared to standard care. Methods Forty 12–18 year-olds with CD diagnosed &amp;gt;3 months prior randomized to hypnosis intervention (HI) or waitlist control (WC). HI receive one in-person hypnosis session focused on enhancing comfort, calm, and energy; education on self-hypnosis; audio recordings for 8 weeks home practice. Assessments at 8 and 16 weeks. Primary outcome: disease-specific health-related (HR) QoL Impact III, single-item QoL modified Cantril Scale, parent-proxy HRQoL PedsQL 4.0. Secondary outcomes: Anxiety, Depressive Symptoms, Sleep Disturbance (PROMIS pediatric short forms); abdominal pain frequency and intensity; Pain Beliefs Questionnaire short form (PBQ-SF); school absences; healthcare utilization; Physician’s Global Assessment (PGA); Pediatric Crohn’s Disease Activity Index. With n=40, 80% power to detect 13-point difference in Impact III. Two-sided Wilcoxon test used to compare differences from baseline to follow up and between groups. Results Demographics: 40 participants enrolled February-May 2019. 50% female. 15.8 y ± 2. PGA: 28 quiescent, 6 mild, 3 moderate, 3 not documented. 18, 8, and 13 of 40 with moderate-severe depressive symptoms, anxiety, and sleep disturbance, respectively. 25 of 40 with abdominal pain in the past week. WC with poorer systemic symptom-related QoL by Impact III (p=0.01) and greater depressive symptoms (p=0.03) compared to HI. Post-Intervention (8 Weeks): In HI and not in WC, significant improvement was noted in parent-reported QoL (p=0.006; Figure 1), maximum abdominal pain intensity (p=0.01, Figure 2), PBQ-SF subdomain emotion-focused coping efficacy (p=0.04), and school absences (p=0.03). 50% of HI participants used self-hypnosis at least 3–4 times per week and tended to have greater QoL improvement than those who practiced less. Participants described improvement in stress, anxiety, and sleep, though corresponding measures were unchanged. 16-week outcomes and disease activity pending. Conclusions Adolescents with CD have pain, reduced QoL, and psychological impairment despite inactive disease. Hypnosis is an acceptable, feasible, and promising complementary therapy in CD and may improve QoL, abdominal pain, coping efficacy, and school attendance. Additional RCTs with longer follow up, objective disease activity assessment, and measures to improve compliance are warranted.

No improvement in quality of life in children with epilepsy treated with the low glycemic index diet

BackgroundUp to 30% of children with epilepsy show a poor therapeutic response to pharmacologic treatment. Ketogenic diets, including the less strict low glycemic index treatment (LGIT), may improve seizure control in pharmacoresistant epilepsy. However, little is known about the quality of life (QoL) in children on LGIT. To explore psychosocial implications of the LGIT on pediatric patients and their caregivers, we have conducted a pilot study to explore the QoL of children and adolescents on the diet. MethodsPediatric patients on LGIT and their parents completed standardized, validated QoL questionnaires (Pediatric Quality of Life Epilepsy Module), one retrospectively and one while being on LGIT. An additional questionnaire included two open-ended questions in order to gain a better understanding of personal experiences of families. ResultsWe enrolled six patients with epilepsy on LGIT between the age of 3 and 13 years. Self-reported QoL decreased in all adolescents, regardless of improvement in seizure control. Parent-reported QoL improved in three of six participants, remained stable in one, and decreased in two patients (both displayed no seizure improvement). Parents and adolescents reported positive experiences of trying new foods and being more health conscious, as well as negative themes such as social isolation and meal preparation difficulties. ConclusionsThe lack of improvement in patient-reported QoL points towards an overall negative impact of the LGIT on patient well-being, despite positive effects on seizure control. Our preliminary results indicate that the benefits of seizure control may subjectively be outweighed by adverse social effects of the LGIT. Families should be made aware of psychosocial risks of the diet. Whenever possible, children should be part of the therapeutic decision-making process. Larger prospective studies are required to fully assess the overall impact of the LGIT.

Parent proxy assessment of sibling quality of life following pediatric hematopoietic cell transplantation

BackgroundWhen a child undergoes hematopoietic cell transplantation (HCT), the impact extends to the entire family, including siblings. Assessment of the quality of life (QoL) of siblings is challenged by their general lack of availability for regular assessment by clinical providers. Thus, the use of parent proxy reporting may be useful. Our aim was to describe the QoL of siblings of HCT survivors, as reported by their parents, as well as to identify parent and family factors associated with lower sibling QoL.MethodsA cross-sectional study was utilized to assess parent-reported QoL of the HCT recipient’s sibling (Short Form (SF)-10 Health Survey for Children and the Pediatric Symptom Checklist (PSC)-17). Parent QoL was assessed using the SF-12. Multivariable linear regression was used to explore hypothesized predictors of sibling QoL, including parent QoL, family impact/function (Impact on Family Scale, Family Adaptability and Cohesion Evaluation Scales, IV, and a question asking about financial problems) while adjusting for demographic and HCT characteristics.ResultsNinety-seven siblings (55% males) with a mean age of 12 years (standard deviation [SD] 4 years) were assessed, representing HCT survivors, who were an average of 5 years (SD 4 years) post-HCT. Neither sibling psychosocial (mean 49.84, SD 10.70, p = 0.87) nor physical health scores (mean 51.54, SD 8.42, p = 0.08) differed from norms. Parent proxies reported behavioral/emotional problems (PSC-17 total score > 15) in 24% of siblings. While parental ratings of their own physical health (SF-12 were higher than norms (mean 53.04, SD 8.17, p = 0.0005), mental health scores were lower (mean 45.48, SD 10.45, p < 0.0001). In multivariable analysis, lower parent emotional functioning and adverse family function were associated with lower sibling QoL, as reported by parents.ConclusionsWhile proxy-reported QoL of siblings did not differ significantly from normative data, both parent QoL and family function were associated with sibling QoL. Future research is needed to understand how siblings themselves perceive their QoL following HCT.

Self- and parent-reported Quality of Life 7years after severe childhood traumatic brain injury in the Traumatisme Grave de l'Enfant cohort: associations with objective and subjective factors and outcomes.

To investigate self- and parent-reported Health-Related Quality-of-Life (HRQoL) and their associations after severe childhood traumatic brain injury (TBI) in the Traumatisme Grave de l'Enfant (TGE) cohort. Self-(n = 34) and/or parent-reports (n = 25) of HRQoL were collected for 38 participants (age 7-22years) 7years after severe childhood TBI. The collected data included sociodemographic characteristics, injury severity indices, and overall disability and functional outcome at 3-months, 1- and 2-years post-injury. At 7-years post-injury, data were collected in the TBI group and in a control group (n = 33): overall disability (Glasgow Outcome Scale Extended), intellectual ability (IQ), and questionnaires assessing HRQoL (Pediatric Quality of Life Inventory), executive functions (Behavior Rating Inventory of Executive Functions), behavior (Child Behavior Checklist), fatigue (Multidimensional Fatigue Scale) and participation (Child and Adolescent Scale of Participation). Parent- and self-reports of HRQoL were significantly lower in the TBI group than in the control group. Parent-rated HRQoL was not associated with objectively assessed factors, whereas self-reported HRQoL was associated with gender (worse in females) and initial functional outcome. All questionnaire scores completed by the same informant (self or parent) were strongly inter-correlated. Reported HRQoL 7-years after severe childhood TBI is low compared to controls, weakly or not-related to objective factors, such as injury severity indices, clinically assessed functional outcomes, or IQ, but strongly related to reports by the same informant of executive deficits, behavior problems, fatigue, and participation.

Relationship between parent mood and resilience and child health outcomes in pediatric asthma.

Asthma is the most common pediatric chronic disease and disproportionately affects urban, minority, and disadvantaged youth. This study explored the relationship between parent and child psychosocial functioning and asthma-related health outcomes in a sample of at-risk children with asthma. We hypothesized that greater parent resilience would be associated with better parent mood, more symptom-free days (SFDs), better child mood, and less child anxiety. Further, we hypothesized that parent resilience would moderate the relationship between parent mood and SFDs. We performed a secondary analysis of baseline cross-sectional enrollment data. Parents of African American children on Medicaid with persistent asthma reported their children's asthma SFDs and their own measures of parent quality of life, mood, and resilience, and child mood and anxiety. Baseline data from 217 parents (92.2% female, Mage = 33.8 years ± 9.5) of children (Mage = 6.6 years ± 2.3) were available. Parent resilience was significantly associated with parent mood. Better parent-reported quality of life (QOL) and mood were significantly associated with more child asthma SFDs. In contrast to our hypothesis, parent resilience did not moderate the relationship between parent mood and SFDs. Higher parent-reported QOL and mood were significantly associated with better parent report of child asthma SFDs. Although parent resilience was associated with parent mood, it did not moderate the relationship to child SFDs. Future research is warranted to better understand the unique contribution of resilience in families with children with asthma. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Relationship between quality of life of children with cerebral palsy and their mothers' depression and anxiety

Objective: To assess the relationship between maternal anxiety and depression and parent-reported quality of life (QOL) of children with cerebral palsy (CP). Methods: A cross-sectional study was done on 232 mothers of CP children aged 5–18 years. Children QOL and mothers' depression and anxiety were assessed using the Pediatric Inventory Parent Version (PedsQL-P), Beck Anxiety Scale (BAS), and Beck Depression Inventory (BDI), respectively. Results: Different degrees of depression in 55.5% of mothers were noted, and 47.4% and 21.6% had moderate and severe anxiety. The mean value of PedsQL-P scores was 69.35 ± 18.18. A significant negative correlation was found between PedsQL-P and both BAS and BDI scores. Conclusion: CP children's mothers had high prevalence of depression and anxiety that had a negative impact on children QOL. The study calls for interventions to improve the mothers' psychiatric status.

Daily living skills in children with autism spectrum disorder and intellectual disability: A comparative study from Turkey

BackgroundBetter daily living skills (DLS) are associated with increased independence and positive functional outcomes in Autism Spectrum Disorder (ASD). MethodThe present study aimed to investigate daily living skills (DLS) and the associated factors in 51 children with ASD and intellectual disability (ASD group) and 51 age- and gender-matched controls with intellectual disability (ID group). The severity of the autistic symptoms was measured with the clinician-rated Childhood Autism Rating Scale and the parent-reported Autism Behavior Checklist (ABC) in all children. The mothers also completed the Pediatric Quality of Life Inventory and the Basic DLS Questionnaire. ResultsThe ASD group scored lower than the comparison group in the total DLS score, personal hygiene, dressing, safety and interpersonal skills, despite being comparable in the parent-reported quality of life. Regression analysis of the whole sample demonstrated that the child’s age, intellectual level, speech level, autism symptom severity and the monthly household income were independent correlates of the total DLS. Exploratory analyses for each group revealed differential effects of these variables: in the ASD group; a higher speech level and monthly income, while in the ID group; an older age, a higher intellectual level and monthly income and a lower ABC score emerged as significant predictors of higher DLS. ConclusionsDeficient DLS in Turkish children with ASD, given their IQ, suggest that lower level of adaptive skills is inherent in ASD, rather than culture-specific to US and Western Europe.

Quality of life in children with developmental language disorder.

Developmental language disorder (DLD) is common in children, but little is known about its association with quality of life (QoL) in middle childhood. QoL is a complex construct, aligning with an individual's sense of well-being and is related to functional limitations associated with DLD. Biopsychosocial models of disability account for both the extent and functional limitations of the impairment; however, the DLD literature rarely reports on both aspects. Studies are required that detail QoL in children with and without DLD. To investigate the association between DLD, identified at 4 years and persisting at 7 years, and QoL over 4, 7 and 9 years; to compare QoL for children whose DLD was mild to moderate and severe at 7 years; and to investigate how variables known to impact on language development (e.g., maternal vocabulary), as well as social-emotional behaviours at 4 and 7 years contribute to QoL at 9 years. The analyses included 872 children who participated in the 4-, 7- and 9-year data collection of the Early Language in Victoria Study (ELVS). We compared the parent-reported QoL profiles at 4, 7 and 9 years for children with and without DLD, and those with mild to moderate and severe DLD using the Pediatric Quality of Life Inventory (PedsQL). We conducted regression analyses to estimate how child, family and environmental factors predicted QoL at 9 years, including social-emotional behaviours measured using the Strengths & Difficulties Questionnaire (SDQ) at 4 and 7 years. Children with DLD (n = 70) had lower parent-reported QoL at 9 years than typically developing children (n = 802), with mean scores of 74.9 and 83.9 respectively. There was no evidence of differences in QoL between those with severe (n = 14) or mild to moderate (n = 56) DLD. In contrast to their peers, children with DLD had a profile of declining QoL between 4 and 9 years. For all children, language skills at 7 years predicted QoL at 9 years. For children with DLD, emotional symptoms and peer problems at 4 years plus SDQ Total Difficulties at 7 years were predictive of lower QoL at 9 years. Children with DLD had a lower QoL than their typical peers at 9 years and, contrary to previous studies, differences in QoL were not observed with DLD severity. Co-occurring social-emotional problems appear to play an important role in contributing to the lower QoL experienced by children with DLD. Consideration of associated functional limitations is required to support the communication and social development of all young children with DLD.

Quality of life and habitual physical activity in children with cerebral palsy aged 5 years: A cross-sectional study

ObjectiveTo compare quality of life (QOL) according to ambulatory status and to investigate association with habitual physical activity (HPA) in children with cerebral palsy (CP) aged 5 years. MethodsFifty-eight participants were classified using Gross Motor Function Classification System (GMFCS) as level I = 33, II = 8, III = 6, IV = 3 and V = 8 and assessed for motor function using 66-item Gross Motor Function Measure (GMFM-66). Participants wore an ActiGraph® triaxial accelerometer for 3 days to measure HPA. Parents completed the parent proxy Cerebral Palsy Quality of Life questionnaire for Children (CP QOL-Child). Linear regression analyses were performed. ResultsAmbulant children with CP (GMFCS I–III) had better parent-reported QOL than non-ambulant children (GMFCS IV–V) in domains of feelings about functioning (mean difference (MD) = 20.0; 95% confidence interval (CI) = 11.7, 28.2), participation and physical health (MD = 14.5; 95%CI = 4.7, 24.4), and emotional well-being and self-esteem (MD = 12.5; 95%CI = 4.8, 20.1). HPA was not associated with QOL domains after controlling for motor function. GMFM scores accounted for 39% of variation for feelings about functioning domain (MD = 0.4; 95%CI = 0.2, 0.6). ConclusionsIn children with CP aged 5 years, HPA was not associated with parent-reported QOL. Gross motor function contributed to QOL domains of feelings about functioning.

Health-related Quality of Life of Paediatric Heart Transplant Recipients in Australia

Background: Little is known about the quality of life (QoL) of children who undergo heart transplantation (HT) in Australia. We examined self- and parent-reported QoL outcomes of these children and the impact on their families.