Quality Of Life Scores In Children Research Articles

Quality of life and physical/psychosocial factors in children and adolescents with orthostatic intolerance

BackgroundOrthostatic intolerance (OI), which is common in children and adolescents, negatively impacts their quality of life (QOL) due to physical symptoms that limit work, school, and daily activities. The purpose of this study is to explore the association of physical and psychosocial factors with QOL scores in children and adolescents with OI.MethodsA cross sectional observational study was conducted. The study participants included 95 Japanese pediatric patients of age 9–15 years who were diagnosed with OI from April 2010 to March 2020. The QOL scores and the QOL T-scores of children with OI assessed using the KINDL-R questionnaire at the initial visit were compared with conventional normative data. The associations of physical and psychosocial factors with the QOL T-scores were examined using multiple linear regression.ResultsPediatric patients with OI had significantly lower QOL scores than healthy children in both elementary (50.7 ± 13.5 vs. 67.9 ± 13.4, p < 0.001) and junior high schools (51.8 ± 14.6 vs. 61.3 ± 12.6, p < 0.001). This finding was observed in the physical, mental, self-esteem, friends, and school domains. Total QOL scores were significantly associated with school nonattendance (β = − 3.2, 95% confidence interval [CI] = − 5.8 to − 0.5, p = 0.022) and poor relationship with school (β = − 5.0, 95% CI = − 9.8 to − 0.4, p = 0.035).ConclusionsThese results suggest that the assessment of QOL, including both physical and psychosocial aspects, especially school factors, needs to be implemented earlier in children and adolescents with OI.

Comparison of neurocognitive and quality-of-life outcomes in pediatric craniopharyngioma patients treated with partial resection and radiotherapy versus gross-total resection only.

The optimal management of pediatric craniopharyngioma patients remains controversial, shifting from radical resection (gross-total resection [GTR]) to a more conservative approach with partial resection/biopsy followed by radiotherapy (PR+RT). To the authors' knowledge, no previous studies have compared neurocognitive and quality-of-life (QOL) outcomes between the two main treatments. In this study, the authors compared changes in intellectual, adaptive, and QOL scores in children treated for craniopharyngioma with GTR and those treated with PR+RT. Patients underwent annual neurocognitive and QOL evaluations for up to 10 years posttreatment, including the Full-Scale IQ, Verbal Comprehension Index (VCI), Perceptual Reasoning Index (PRI), Working Memory Index (WMI), and Processing Speed Index (PSI). Child- and parent-reported QOL scores and adaptive behavior in different domains were assessed. General linear mixed models were used to examine change in scores over time by treatment group with adjustment for significant covariates. Scores from 43 patients treated between 2009 and 2019 (21 GTR, 22 PR+RT) were examined. Within the PR+RT group, 9 patients had intensity-modulated RT and 13 had proton beam therapy. The treatment groups were similar in sex (44% male) and age (median 7.3 years). There were no significant differences in the trajectory of intellectual functioning or QOL scale scores between the two groups. However, patients who underwent GTR exhibited significant improvement over time in overall adaptive behavior (p = 0.04) and conceptual skills (p = 0.01), which was not observed in patients treated with PR+RT. Long-term pediatric craniopharyngioma survivors treated with GTR and PR+RT have similar intellectual function and QOL. Larger studies are needed to explore small but clinically significant differences between the two groups.

Evaluation of the effects of the toilet training process on the children's quality of life.

Toilet training is a significant developmental milestone for children. During the process of toilet training, voiding and defecation problems may develop, which have a major adverse impact on the child's quality of life (QoL). The aim of this study was to assess voiding and defecation problems in the process of toilet training and evaluate how these issues influenced the children's QoL. The children included in the study were followed up at the Department of Social Pediatrics, Ankara University School of Medicine. Participants were surveyed via a questionnaire that included sociodemographic features, the toilet training process, and the Pediatric Quality of Life Inventory. The study included 177 children and their parents. There was no correlation between the parents' age, sociodemographic features, or the timing of the start of toilet training. Voiding problems were found in 55.6% and defecation problems in 23.6% of the children included in the study. Urinary retention during play and nocturnal enuresis were more frequent in the children toilet trained at 25-36months of age. The self-reported QoL scores in children with voiding problems and with both voiding and defecation problems were lower than those in children did not have any problems. Even if a child has been toilet trained, it is essential to investigate daily urination and defecation habits at every follow-up visit and to discuss with families when a physician should be consulted.

Effect of family income and physical activity on children’s quality of life

ABSTRACT It is unclear whether gender differences exist in the relationship between maternal physical activity (PA) and children’s quality of life (QoL). We also know relatively little about the potential role of PA in mitigating the adverse impact of family financial hardship. This study examined the interaction effect of PA with social and demographic factors on QoL among 272 primary school children and their mothers in Hong Kong. Children self-reported their QoL, whereas mothers reported their own and children’s PA levels. Mothers also reported their family demographics including monthly household income. Moderated multiple regression models were calculated to examine 1) the relationship between maternal PA and child QoL based on child gender and 2) the relationship between family income status and child QoL based on maternal-child PA level status. The relationship between maternal PA and child QoL varied by child gender (β = .21, p = .049), with boys of active mothers showing higher QoL. Compared to active families, when both mothers and boys were inactive, there were bigger income differences in child QoL scores (β = .37, p = .041). No significant differences were observed in girls. The findings have implications for family-based PA interventions and highlights the benefits of PA toward the QoL of male children in disadvantaged families.

Fear of hypoglycemia in children with type 1 diabetes and their parents: Validation of the Italian version of the Hypoglycemia Fear Survey for Children and for Parents.

Currently, Italian versions of the Hypoglycemia Fear Survey for Children (CHFS) and for Parents (PHFS) quantifying Fear of Hypoglycemia (FoH) in pediatric diabetes are not available. To validate the Italian version of the CHFS and PHFS. One hundred and seventy-four children with type 1 diabetes aged 6-18 and 178 parents completed the CHFS and PHFS, the PedsQL 3.0 Diabetes module and the KIDSCREEN-10. Internal consistency was good (α= 0.85 for CHFS, α= 0.88 for PHFS); validity was supported by correlations of CHFS total score (CHFS-T r= -0.50; p< 0.001, CI=-0.62 to -0.35) and Worry subscale (CHFS-W r= -0.49; p< 0.001, CI=-0.62 to -0.32) with measures of health-related quality of life (QoL), which were not related to PHFS scores. Factor analyses justified the structure and the separate scoring of Behavior and Worry subscales. Children's age was negatively correlated with CHFS-T (r= -0.16; p= 0.03, CI=-0.36 to 0.00), CHFS-W (r= -0.29; p= 0.02, CI=-0.39 to -0.07), PHFS-T (r= -0.20; p= 0.006, CI=-0.35 to -0.04), PHFS-B (r= -0.30; p= 0.001, CI=-0.43 to -0.17). Mean (SD) item scores of CHFS-T (1.47 ± 0.56 vs. 1.27 ± 0.57; p< 0.05) and CHFS-W (1.20 ± 0.73 vs. 0.96 ± 0.68; p< 0.05) were higher in children with HbA1c ≥7.5%. Higher levels of distress for upsetting hypoglycemia were associated with lower child's QoL scores as perceived by children (Peds-QL: 72.6± 12.8 vs. 80.4± 11.9; p< 0.001) and parents (Peds-QL: 70.6± 13.8 vs. 75.8± 12.9; p< 0.05). The Italian version of CHFS and PHFS appears to be a valid measure to assess FoH in clinical practice and factor analysis supports separate scoring for the Worry and Behavior subscales.

Improving Patient Education for Atopic Dermatitis: A Randomized Controlled Trial of a Caregiver Handbook

To evaluate if an educational handbook could improve atopic dermatitis (AD) symptoms, caregiver confidence in AD management skills, and AD-related quality of life.In the study, researchers included children ages 1 month to 16 years with AD and their caregivers who had scheduled new or follow-up clinic appointments for the evaluation and management of AD at Boston Children’s Hospital. Inclusion criteria consisted of AD diagnosis confirmed by the health care provider during a clinic visit and an English-speaking caregiver.A randomized nonblinded controlled trial that was stratified to handbook and control arm. In the handbook arm, participants received a handbook in addition to standard AD care, versus only standard care in the control arm. Furthermore, each clinical program from which the participants was recruited was a separate randomization block. These clinical programs included allergy, dermatology, the Atopic Dermatitis Center (an interdisciplinary specialty clinic for AD), and primary care. All caregivers completed a self-reported questionnaire at baseline and a 3-month follow-up. After the baseline visit, the participants in the handbook arm were given a handbook and told to read it as a tool to help manage the child’s AD. The symptoms associated with AD were measured by using the Patient-Oriented Eczema Measure (POEM). POEM scores range from 0 (clear; no eczema) to 28 (severe eczema).A total of 245 patients from the ages of 3 months to 16 years were randomly assigned in this study. Of the total 245 randomly assigned patients, 175 caregivers completed questionnaires and were included in the repeated-measure analysis. There were 91 caregivers in the handbook arm and 84 in the control arm. The patients lost to follow-up were more likely to be African American or Hispanic (P < .14). The adjusted mean POEM score (±SD) decreased from 12.1 ± 9.9 to 7.7 ± 8.7 (difference: −4.4 [95% confidence interval (CI): −5.7 to −3.0]) in the handbook arm and 12 ± 10 to 8.6 ± 8.8 in the control arm (difference: −3.4 [95% CI: −4.8 to −2.0]; P = .343). Confidence scores (P = .093), infant quality of life (P = .944), child quality of life scores (P = .114), and family impact scores (P = .933) were not significant between time and study arm. The adjusted mean confidence score among new patients increased from 67 (95% CI: 60 to 74) to 83 (95% CI: 77 to 88) in the handbook arm, compared with 74 (95% CI: 65 to 82) to 75 (95% CI: 67 to 83) in the control arm (P = .012). Most of the caregivers found the handbook to be helpful.The use of the handbook did not significantly improve AD symptoms, when compared with standard care alone. Nonetheless, caregivers did find the handbook useful, and it may be especially useful to families managing a new diagnosis of AD.As health care providers, we often look for new and innovative ways to improve the care for our patients. Although, in this study, researchers did not find a significant difference in symptom or quality of life outcomes versus standard management, it is not to say another or modified tool would not have the desired impact. Consequently, the analysis of educational resources among various study populations and diseases should continue in an effort to improve overall management and health outcomes.

Effects of advanced carbohydrate counting on glucose control and quality of life in children with type 1 diabetes.

The effect of advanced carbohydrate counting (ACC) on metabolic and quality of life (QOL) outcomes is uncertain in children with type 1 diabetes. Our aim was to determine whether ACC would improve HbA1c and QOL scores as compared with standard nutrition in this population. We randomized 87 patients using pump and rapid-acting analogs in a 1 year randomized multicenter study (age 9.6 ± 3.5 years, diabetes duration 4.6 ± 2.7 years, HbA1c 7.8 ± 0.5% [62 ± 5 mmol/mol]). The ACC group received CC education and the control group received traditional dietary education. HbA1c was measured every 3 months. At 0 and 1 year, general, diabetes-specific, and diet-related QOL were respectively assessed by the KIDSCREEN and WHO-5 questionnaires, the diabetes-specific module of the DISABKIDS, and the diet restriction items of the DSQOLS. Mean HbA1c was lower in the ACC than the control group at 3 months (P < .05) and tended to be lower at 6 months (P = .10), 9 months (P = .10), but not at 12 months. The mean of individual average HbA1c during the one-year study period (from M3 to M12) was 7.63 ± 0.43 in the ACC vs 7.85 ± 0.47% in the control group (60 ± 5 vs 62 ± 5 mmol/mol)(P < .05). ACC was associated with significantly higher scores at 1 year on the KIDSCREEN children's psychological scale and the KIDSCREEN parents' physical scale, the DISABKIDS children's treatment scale, and the children's and parents' dietary restriction scales of the DSQOLS (indicating better QOL or lower perceived diet restriction). ACC may be associated with small improvements in metabolic control and QOL scores in children.

Is continence status associated with quality of life in young children with spina bifida?

To evaluate the relationship between child- and parent-reported quality of life (QOL) and bowel and bladder continence among young children with spina bifida (SB). 104 children ages 5-12 years and one of their parents/guardians completed the Pediatric Quality of Life Inventory - Generic Form (PedsQL; parent and child) and the Quality of Life in Spina Bifida Questionnaire (QOLSBQ, parent only). Data on continence, child age, and condition-specific variables were obtained by chart review. Parent and child QOL scores (on all measures of QOL) were positively correlated; parents rated child QOL lower than children's self report. QOL scores did not differ based on continence status. Total PedsQL scores were associated with age and mobility based on child report and with mobility based on parent report. QOL may not be affected by continence status among young children with SB, though demographic (i.e., age) and condition-specific (i.e., functional mobility status) variables appear relevant. Additional research is needed to further evaluate condition-specific variables, other protective variables, and possible measurement issues that influence QOL in young children with SB.

Abstract 14337: Preschool Neurodevelopmental Outcomes in Children With Congenital Heart Disease After Surgical Palliation

Introduction: Children with congenital heart disease (CHD) are at risk for neurodevelopmental (ND) delays. The American Heart Association (AHA) recommends serial ND evaluation for children with CHD. This study reports preschool ND testing results of children with CHD. Methods: Children with CHD meeting the AHA high-risk criteria for ND delay were referred for evaluation at 4-5 years of age. Testing included standardized neuropsychological measures. Parents completed measures of adaptive behavior, emotional functioning, social skills, attention, language, family functioning and child quality of life (QOL). Patient scores and parent ratings were compared to test norms and were classified as: average (within one SD of test mean); at risk (1-2 SDs from the test mean); and impaired (&gt;2SD from test mean). T-tests were used to compare scores based on cardiac anatomy (1V vs. 2V). Results: Data on 102 consecutively referred patients were analyzed. Median age at first cardiac operation was 13 days. Mean age at testing was 4.5 years (range 4 to 5.9). Patients had the following characteristics: 1V anatomy 33%; male 63%; prenatal diagnosis 54%; premature 16%; non-white/Hispanic race 16%; and comorbidities: medical 26%, genetic 17%. ND test scores were lower than norms for IQ, pre-spelling, visual-motor, fine motor, adaptive behavior, and social skills, and higher than norms for attention problems; however, means were within one SD of norms for all measures. ND scores did not differ based on cardiac anatomy (1V vs. 2V); however, parents of children with 1V reported lower child QOL scores and worse family functioning than parents of children with 2V (p&lt;0.05). The % of children within the normal, at risk, and impaired range on ND measures is presented in the figure. Conclusion: ND outcome for preschool aged children identified more delays than expected in some areas. Most deficits were mild and may not be detected without formal testing. ND outcome was not related to cardiac anatomy.

Correlation between REM AHI and quality-of-life scores in children with sleep-disordered breathing.

Prior research has demonstrated poor correlation between the obstructive apnea-hypopnea index (AHI) on full-night polysomnogram (PSG) and quality-of-life (QOL) scores. We aim to examine the association between rapid eye movement (REM) AHI and QOL scores in children with sleep-disordered breathing (SDB). Prospective trial. Two tertiary children's hospitals. Children between 3 and 16 years of age with suspected SDB who were undergoing PSG were eligible. Children with craniofacial anomalies were excluded. Subjects' caregivers completed the Obstructive Sleep Apnea-18 (OSA-18), a validated QOL survey. Power analysis determined a group size of 34. One hundred twenty-seven patients were enrolled. The mean (SD) age was 6.3 (3.3) years. Most subjects (52%) were black and 26% were obese. The mean (SD) obstructive AHI of the subject population was 5.4 (11.9), while the mean (SD) REM AHI was 13.1 (23.7). The mean total OSA-18 score was 65.2, indicating a moderate impact of SDB on QOL. Neither the obstructive AHI (P = .73) nor the REM AHI (P = .49) correlated with total OSA-18 scores. However, lower nadir oxygen saturation was associated with significantly poorer QOL (P = .02). The sleep disturbance OSA-18 subset score significantly correlated with both the obstructive AHI (r (2) = 0.22; P = .01) and the REM AHI (r (2) = 0.22; P = .01); the remaining 4 subset scores did not correlate with either factor. Neither obstructive AHI nor REM AHI correlates with total OSA-18 QOL scores. With the exception of nadir oxygen saturation, PSG parameters do not reflect the burden of SDB on QOL in children.

The effect of visual impairment on quality of life of children aged 3–16 years

BackgroundIt is well known that visual impairment (VI) has a detrimental effect on Quality of Life (QoL) in adults. Little is known about the effects of VI in childhood.AimsTo evaluate...