Health-related quality of life of Estonian adolescents: reliability and validity of the PedsQL™ 4.0 Generic Core Scales in Estonia

Aim: The main aim of this study was to examine the reliability and validity of the Pediatric Quality of Life Inventory? 4.0 (PedsQL^? 4.0) Generic Core Scales among Estonian adolescents. Gender differences in health‐related quality of life (HRQoL) were also investigated. Methods: The 654 adolescents (309 boys and 345 girls) aged 13–14 years (M age = 13.57 years, SD = 0.62) completed Estonian version of the PedsQL^? 4.0. Results: Results of the confirmatory factor analysis for a five‐factor model of the Estonian version of PedsQL^? 4.0 approached the criteria of acceptable fit after setting error covariance to be free between some of the items within physical health, emotional functioning and social functioning subscales. Cronbach’s alpha coefficients exceeded the minimum criterion of 0.70 for all subscales except for days missed from school because of illness subscale. With regard to gender differences, consistent with previous studies, girls reported lower level on total score of HRQoL as well as its aspects of physical health, emotional functioning and psychosocial health. Conclusion: The present study revealed that after some modifications, the PedsQL^? 4.0 could be considered as suitable instrument to measure HRQoL among Estonian adolescents.     

The PedsQL Brain Tumor Module: initial reliability and validity

BACKGROUND: Brain tumors (BT) are second only to acute lymphoblastic leukemia as the most prevalent form of pediatric cancer, with BT 5-year survival rates approaching 70%. With increased survival, quality of life has emerged as an essential health outcome. This investigation examines the internal consistency reliability and construct validity of the Pediatric Quality of Life Inventory (PedsQL) Brain Tumor Module. METHODS: The PedsQL 4.0 Generic Core Scales, PedsQL Multidimensional Fatigue Scale, and PedsQL Brain Tumor Module were administered to 99 families. The average age of the 56 boys and 43 girls was 9.76 years (range=2-18 years). The sample included children with tumors located in the posterior fossa/brainstem (N=62, 62.6%), supratentorial (N=15, 15.2%), and midline (N=22, 22.2%). Children were on treatment (N=46, 46.5%), off treatment<12 months (N=19, 19.2%), or off treatment>12 months/long-term survivor (N=34, 34.3%). Treatment included radiation (N=61, 61.6%), surgery (N=83, 83.8%), chemotherapy (N=87, 87.9%), and bone marrow transplant (N=5, 5.1%). RESULTS: Internal consistency reliability was demonstrated for the 24-item PedsQL Brain Tumor Module (average alpha=0.78-0.92, parent proxy-report, n=99; average alpha=0.76-0.87, child self-report, n=51). Construct validity for the PedsQL Brain Tumor Module was supported through an analysis of the intercorrelations with the Generic Core Scales and Fatigue Scale. CONCLUSIONS: The findings provide support for the measurement properties of the PedsQL Brain Tumor Module.     

Quality of life and psychological adjustment in children and adolescents with neurofibromatosis type 1

OBJECTIVE: To assess quality of life (QoL) and psychological adjustment in children and adolescents with neurofibromatosis type 1 (NF1). STUDY DESIGN: Forty-six patients with NF1 were investigated between the ages of 7 and 16 years (mean, 11.6 years), with children and parents used as informants. TNO-AZL Questionnaire for Children's Health-Related Quality of Life and Child Behavior Checklist scores were compared with healthy reference groups. Predictive values of sociodemographic variables, illness-related variables, and family-related variables for quality of life and psychological adjustment were assessed. RESULTS: Most dimensions of QoL in NF1 children and adolescents were different from reference values. Deviations in the NF1 group were an impairment of motor, cognitive, and social functioning and a reduction of positive and negative emotions. Also, psychological adjustment in patients with NF1 was significantly impaired compared with normal subjects. Illness-related variables had a negative impact on the emotional domain of QoL. Good family relationships positively affected both QoL and psychological adjustment. CONCLUSIONS: QoL and psychological adjustment are impaired in children and adolescents with NF1. Illness-related variables and the quality of family relationships are important predictors.     

Reduced quality of life in children with Gastro‐oesophageal reflux disease

Aim: To assess self‐reported Quality of life (QoL) in children with Gastro‐oesophageal reflux disease (GORD) aged 5–18 and compare this with both disease and healthy control children in a prospective consecutive sample. Methods: All children attending a tertiary paediatric gastroenterology clinic from February 2009 to May 2009 with GORD, chronic constipation and inflammatory bowel disease (IBD) were asked to complete the validated PedsQL generic QoL assessment (self‐report) at their clinic appointment. The PedsQL considers physical, emotional, social and school domains and is scored from 0 to 100. Healthy children were also recruited from the same site. Groups were compared using the independent samples Student’s t‐test. Results: A total of 184 children completed the assessment [103 (56%) male, mean age 10.7 years ± 3.3] including 40 children with GORD, 44 with chronic constipation, 59 with IBD and 41 healthy children. QoL was significantly lower in the GORD group compared with both children with IBD (74 vs. 82) and healthy children (74 vs. 84), and was comparable to that of children with chronic constipation (74 vs. 74). Conclusions: Self‐reported QoL in children with GORD attending a tertiary paediatric gastroenterology clinic is significantly reduced compared with both healthy children and children with IBD.     

Psychological Aspects in Children and Adolescents With Major Thalassemia: A Case-Control Study

Background:

Thalassemia is an inherited blood disease. It is a serious public health problem throughout the Mediterranean region, the Middle East and the Indian subcontinent, as well as in Southeast Asia.

Objectives:

Thalassemia is an inherited blood disease. It is a serious public health problem. In this study we assessed psychological aspects in Iranian children and adolescents with thalassemia major.

Patients and Methods:

In this case-control study sixty healthy subjects aged 7-18 years and Sixty Patients with confirmed diagnosis of major thalassemia were enrolled. After obtaining informed consent from parents of all participating thalassemia patients and healthycontrols, we assessed psychological aspects and quality of life by Pediatric Quality of LifeTM (PedsQL™), Strengths and Difficulties Questionnaires (SDQ), State and Trait Anxiety, Children''s Depression Inventory (CDI).

Results:

The results of this study indicate that there are significant changes in depression, anxiety, QOL and behavioral screening between children with thalassemia major compared with healthy subjects by means of both parents and children reports. According to the results, children with thalassemia major have more psychological problems than healthy ones. Patients with thalassemia have a lower QOL than their peers (P = 0.001), the rate of depression is higher in this group (P = 0.015), Also behavioral problems in these children are more than healthy subjects (P = 0.009).

Conclusions:

We recommend appropriate treatment and counseling procedures in addition to specific treatment of thalassemia. According to the results we suggest to establish pediatric psychiatric clinics beside thalassemic clinics to cure psychological aspects of the disease.     

Psychological problems and quality of life in children with thalassemia

Objective The study is aimed to assess psychological problems and quality of life (QOL) in children with thalassemia. Methods Thirty-nine children (8–16 yr) with transfusion dependent thalassemia attending day care services for blood transfusion were assessed for psychological problems using the Childhood Psychopathology Measurement Schedule and QOL was assessed using the EQ-5D. Results Forty-four percent of the children had psychological problems and 74% had a poor QOL. Anxiety-related symptoms (67%), emotional problems, particularly depression (62%), and conduct problems (49%) were the main findings. The children were most likely to report impaired QOL due to severe difficulties in pain/discomfort (64%) dimension, followed by depression and mobility problems of equal severity (33%). The side effects of chelation were an independent predictor of psychological problems and impaired QOL. Also psychological problems were a significant predictor of impaired QOL. Conclusion The recognition and management of the psychological problems that accompany chronic physical illnesses including thalassemia would optimize treatment outcomes and QOL.     

个体化干预模式在儿童肝移植受者术后随访中的应用

目的探讨个体化护理干预对提高儿童肝移植受者社会生活能力的效果。方法将2013年12月至2015年6月在本院随访的64例儿童肝移植受者,随机分为个体化护理干预组(实验组)和常规药物指导组(对照组)。对照组按原有随访模式仅进行常规药物及对症健康指导,实验组在随访过程中采用个体化随访干预模式,干预时间12个月,比较两组干预前后的社会生活能力评分。结果干预组社会生活能力各方面有较大提高,在自我管理能力、运动能力、集体活动能力方面均逐步恢复正常,学习生活能力达到优秀。两组干预前后,社会生活能力各项指标差异有统计学意义(P0.05)。结论有针对性地对儿童肝移植受者在生长发育各阶段中存在的影响社会生活能力的问题,进行个体化干预,能够有效提高其远期生活质量。     

Effects of Probiotics on Quality of Life in Children with Cystic Fibrosis; A Randomized Controlled Trial

Objective

Patients with cystic fibrosis (CF) usually have abnormal intestinal microbiota and dysregulated immune mediators due to massive exposure to antibiotics. Probiotics as immunomodulatory and anti-inflammatory substances are considered to improve both clinical and biochemical intestinal and pulmonary function in CF patients. We decided to investigate the effects of probiotics on quality of life and pulmonary exacerbations in children with cystic fibrosis.

Methods

In a prospective, randomized, controlled clinical trial, 37 CF patients (2-12 years old) were randomly divided into two groups. 20 patients of probiotic group took probiotics (2×10⁹CFU/d) for one month while 17 patients of control group took placebo capsules. Quality of life was determined using PedsQL™4.0 questionnaire at the beginning, then three and six months after completing the treatment period. Rate of pulmonary exacerbation in probiotic group patients was also evaluated during three months after intervention and compared to the same three months of the previous year. Results were analyzed using SPSS (11.5). P<0.05 was considered statistically significant.

Findings

Significant improvement was observed in the mean total score of parent reported quality of life among probiotic group patients in comparison with placebo group at 3^rd month (P=0.01), but this was not significant at 6^th month of probiotic treatment. Rate of pulmonary exacerbation was significantly reduced among probiotic group (P<0.01).

Conclusion

Probiotics are considered as useful nutritional supplements on reducing number of pulmonary exacerbations and improving quality of life in patients with cystic fibrosis. Effects of probiotics seem to be temporary and probably continuous ingestion might have more stable improving effects on quality of life.