QOL In Children Research Articles

Impact of hemispherotomy on quality of life and burden of caregivers in children and adolescents: a retrospective observational study.

To evaluate QOL and caregiver burden of children and teenagers submitted to hemispherotomy for pharmacoresistant epilepsy, by comparing pre and post-surgical intervention data. Retrospective analysis of pediatric patients submitted to surgical hemispherotomy before intervention (preOP) and their follow-up at 6months (6M PO) and 2years (2Y PO) after surgery. QOL was evaluated through the Quality of Life in Childhood Epilepsy (QVCE-50) questionnaire and caregiver burden, through the Zarit Burden Interview (ZBI) tool. Twenty-two patients were included in the study. Sixteen patients (72%) were classified as Engel I at 2Y PO follow-up. QVCE-50 scale showed improvement of total QOL at 2Y PO. In relation to QVCE-50-specific domains, there was an improvement in the physical domain and in the cognitive-education a decrease in psychological and a stabilization in social/familiar domain scores. The majority of caregivers classified their burden as mild to moderate, with no PO improvement. Hemispherotomy represents an effective seizure control treatment, as well as it contributes to improvement of QOL, particularly in the physical domain and in spite of children's physical and cognitive limitations. However, no improvement in caregiver burden was observed, probably due to the chronic condition of these patients, which might be worsened by social issues.

Effect of Maternal Knowledge of Asthma Management on Quality of Life and Asthma Control among Children with Asthma: A Cross-Sectional Study.

This study aimed to evaluate the effect of mothers' knowledge about asthma management on quality of life and asthma control among children with asthma in Palestine. This cross-sectional study was carried out by mothers of children with asthma in Palestine in four major public hospitals. Mothers of a total of 220 were selected randomly via a computerized system. Data were collected using Pediatric Asthma Quality of Life (PAQLQ), an Asthma Control Test (ACT), and the mothers' Self-Practices and Knowledge (SPK) of asthma management questionnaire. Statistical analysis was performed using SPSS (V25). A total of 220 mothers of children with asthma were randomly selected and invited to participate but 182 agreed to participate, with a response rate of 83%. The mean age of participant children was 9.7 ± 2.72 years, and the mean age of mothers was 34.5 ± 9.6 years. The mean score of the QoL was 3.91(SD ± 1.61) out of 7. Most participant children had uncontrolled asthma with a total mean score of 14.13(SD ± 5.23) on the ACT. The mean score of mothers' SPK level was 2.12(SD ± 0.83) with a total mean score of 42.13 ± 3.68 out of 68, which indicated a moderate level of knowledge and there was a strong correlation between mothers' SPK and children's QoL. The investigation showed that mothers of children with asthma had moderate SPK, and the children had uncontrolled asthma with poor QoL. These findings suggest developing educational initiatives to enhance parents' asthma-related knowledge and skills to improve their children's asthma-related quality of life and asthma control.

Rubinstein-Taybi Syndrome Clinical Characteristics from the Perspective of Quality of Life and the Impact of the Disease on Family Functioning.

Background/Objectives: Rubinstein-Taybi Syndrome (RSTS-OMIM, #180849) is a rare genetic disorder associated with distinctive clinical features, including a typical craniofacial appearance, global developmental delay, intellectual disability and broad, angular thumbs and fingers. The main aim of the study was to evaluate the health problems of children with RTST, their quality of life and the impact of the disease on family functioning. In addition, we investigate whether comorbidities, autistic behavior and eating problems affect the children's overall QOL. Methods: A cross-sectional study was performed, including a total of 13 caregivers of children diagnosed with RSTS. A self-reported questionnaire [SRQ], medical records and the Pediatric Impact Module PedsQLTM 2.0, the Pediatric Quality of Life PedsQLTM 4.0 were used to obtain data on QOL and the impact of the disease on family functioning. Results: The overall QOL score for children with RSTS was x = 52.40; SD 13.01. The highest QOL was in emotional functioning (EF; x = 59.23; SD 18.69), while the lowest QOL was in physical functioning (PF; x = 48.56; SD 16.32) and social functioning (SF; x = 48.85; SD 18.84). There was a statistically significant negative correlation (p < 0.03; r = -2.01) between the age of the child and their QOL, indicating that older children had lower QOL scores. The mean overall rating for the impact of RSTS on family functioning was x = 50.00; SD 10.91. Caregivers reported the highest scores for cognitive functioning (CF; x = 64.23; SD 23.70) and family relationships (FR; x = 60.00; SD 17.17). The lowest scores were for daily activities (DA; x = 41.03; SD 17.17) and worry (W; x = 37.69; SD 18.55). Conclusions: This study provides the first comprehensive exploration of the QOL of children with RSTS) and its impact on family functioning.

Health-related quality of life outcomes in children after congenital heart disease surgery in low-middle-income countries: a systematic review and meta-analysis.

Improved treatments for children with congenital heart disease (CHD) have led to a growing interest in long-term functional outcomes such as health-related quality of life (HRQOL). Studies on HRQOL in children with CHD have yielded contradictory results. In this study, we aimed to perform a systematic review and meta-analysis to analyze the effect of surgery on HRQOL outcomes in children with CHD in low-income and middle-income countries. A comprehensive search for articles was performed using the Medline (PubMed), Scopus, and Embase databases from their inception to September 5, 2023. Studies reporting QOL outcomes in children <18 years and published in English were included. Of the 1239 records screened, 10 studies, including 1721 participants, were included in the study. The overall QOL was significantly better in the control group than in the children who underwent surgery for CHD (P=0.04, standard mean difference of -0.62, 95% CI: -1.2 to -0.04), and the overall QOL was significantly better in the children with CHD after surgery than before surgery (P=0.05, standard mean difference of -0.56, 95% CI: -1.11 to -0.01). The QOL of children from low-income and middle-income countries who undergo surgery for CHD is significantly poorer than that of controls in all dimensions except the emotional domain. Meanwhile, surgery has the greatest impact on improving the physical domain in children with CHD after surgery. Strategies to improve HRQOL in this subgroup of patients should be further investigated.

Transcultural adaptation to Spain of the CDPQOL questionnaire specific for coeliac children.

This study aimed to translate, cross-culturally adapt, and validate the CDPQOL questionnaire, a coeliac disease (CD)-specific paediatric health-related quality of life (HRQoL) instrument (CDPQOL), in Spanish children with CD. The CDPQOL questionnaire has two versions for children aged 8-12 and 13-18. Translation and linguistic validation were performed following an international consensus process. Internal consistency was calculated using Cronbach's alpha and McDonald's omega coefficients, and convergent validity was assessed with average variance extracted (AVE). Confirmatory factor analysis (CFA) and exploratory factor analysis (EFA), when necessary, were carried out to assess the construct validity. A total of 235 children were included. In the 8-12 age group, a change in the distribution of items to a new structure of three dimensions (negative emotions, food feelings and social interaction) was required. In this new model, CFA supported the fit of the model (χ2/gl = 1.79, RMSEA = 0.077 (IC 95% 0.05-0.100), CFI = 0.969, TLI 0.960, SRMR = 0.081) and Cronbach's alpha and McDonald's omega coefficients were > 0.7 in all three dimensions. In the 13-18 age group, CFA showed that all fit indexes were acceptable (χ2/gl = 1.702, RMSEA = 0.102 (IC 95% 0.077-0.127), p < 0.001, CFI = 0.956, TLI = 0.947, SRMR = 0.103) and Cronbach's alpha and McDonald's omega coefficients were > 0.7 in all three dimensions, except for uncertainty dimension. Conclusions: The Spanish version of the CDPQOL questionnaire is a useful instrument to assess quality of life in coeliac children whose native language was Spanish spoken in Spain, with changes in item distribution in the younger age group questionnaire. What is Known: • The first specific questionnaire for coeliac children, Dutch Coeliac Disease Questionnaire (CDDUX), which focuses on diet, was translated into Spanish and validated allowing to evaluate the HRQoL of Spanish coeliac children. • Spanish Children and parents feel the disease had no substantial negative impacts on patient HRQoL using this questionnaire, similar to that observed with other countries. What is New: • The age specific for CD children (CDPQOL) was elaborated in the USA and focuses on other aspects not evaluated by CDDUX such as emotional and social issues related to living with CD. • The CDPQOL was translated into Spanish and validated allowing it to be used to assess Spanish coeliac children's QoL.

Quality of life and support needs in children, adolescents, and young adults with facioscapulohumeral dystrophy, a mixed-method study

Background and objectivesQuality of life (QoL) in children with facioscapulohumeral dystrophy (FSHD) seems plausible decreased. Little is known about factors influencing QoL in children with FSHD. Our objective is to explore factors contributing to the QoL of children, adolescents, and young adults with FSHD, to describe how they experience life with FSHD, and to report their support needs. MethodsWe performed a mixed-method study with individual age-appropriate semi-structured interviews assessing QoL in children, adolescents, and young adults with FSHD and their parents. To characterize the sample, quantitative data on QoL, pain, fatigue, and participation were collected. Interview data was analyzed using a thematic analysis. ResultsFourteen patients participated (age between 9 and 26 years old, eight males and six females). The degree of FSHD severity, as indicated by the FSHD-score, did not correlate with QoL. Older children had a lower QoL than younger children. Children and adolescents strived for normality regardless of physical discomfort. Phenotypical features of FSHD led to insecurity aggravated by hurtful comments of others. The unpredictability of disease progression and its implications for career and parenthood choices led to a generalized feeling of uncertainty about the future. Support was found within family and friends. Participants expressed a need for peer support and psychological support as well as recommending it to others. DiscussionQuality of life in childhood FSHD is diminished caused by their physical limitations, altered appearance, fear of social rejection, and uncertainty of the disease progression in the future. A fear of social rejection most likely contributes to striving for normality regardless of physical discomfort. Support should be focused on acceptance and coping with hurtful comments. It should preferably be individualized, easily accessible and not offered as therapy but rather as tutoring for children.

The impact of posterior urethral valves on pediatric quality of life and family function: Prospective analysis of serial patients managed in a dedicated multidisciplinary clinic

Posterior urethral valves (PUV) is a chronic condition that can adversely impact child and family health related quality of life (HRQOL). Surprisingly, to date, the impact of this condition on the QOL of children with PUV has not been studied. Thus, our aim is to evaluate this important aspect of care using validated questionnaires in our institutional PUV clinic. From December 2022 to January 2024, the PedsQL Inventory and associated family impact module was distributed in our PUV clinic. Higher scores reflect better HRQoL and less impact on family. Children >8 years old completed the tool themselves, otherwise parents completed the tools on behalf of the child. We compared PUV scores against reported psychometric data from healthy children and other chronic illnesses. A total of 112 families completed the questionnaires. The total HRQoL score was 80±13. Overall, we noted that the domains reflecting psychosocial impact were significantly lower than those of physical well-being (76±16 vs. 89±15 for psychosocial and physical impact, respectively; p<0.01). There was a significant difference in the psychosocial emotional impact for children managed with clean intermittent catheterization (CIC) compared to those who were not (69±21 vs. 81±16; p=0.005) (Table 2). In addition, we noted that children with PUV scored similar to healthy controls, but higher than children with other chronic illnesses. With respect to the impact on family, overall, parent, and family impacts were 76±19, 78±21, and 81±21, respectively. Chronic illness has been associated with a negative impact on HRQoL in both adults and children. We noted similar findings the present study, particularly for young children and those who are maintained on CIC. To our knowledge, this is the first study to evaluate the impact of PUV on a child's HRQoL as well as the impact on the family, and to document a negative psychosocial impact of CIC in this population. However, there are some important limitations to be addressed including relying on families to complete questionnaires accurately during busy clinic visits and the lack of controls from the same environment. When compared to healthy controls, PUV patients score similarly in HRQoL assessment. In addition, children <3years of age report a negative impact on physical well being, and CIC negatively impacts the emotional well-being. These data can be used to advocate for better mental health supports and social work for these children.

Health-related quality of life and family functioning of primary caregivers of children with down syndrome.

Down Syndrome (DS; OMIM #190685), known as trisomy 21, is one of the most common genetic disorders in the human population and the commonest known cause of intellectual disability. The study was conducted to investigate the quality of life (QoL) of children with DS syndrome and its impact on family functioning. To assess the quality of life of children with trisomy 21 and the impact of the disorder on the family. We used a cross-sectional questionnaire study. The respondents were 52 parents of children with trisomy 21. The following structured questionnaires were used: the PedsQL™ 4.0 Generic Core Scales, the PedsQL™ Family Impact Module and Study-Specific Questionnaire (SSQ). The combined scores, with a mean value of approximately 55 out of a possible 100 points, indicated a significant impact of the child's genetic defect on family functioning. In the overall QOL, the highest rated domain was physical functioning (x̅ =60.14; SD = 23.82) and the lowest was school functioning (x̅ =51.36; SD = 18.72). Better school functioning (p = 0.022) was reported for girls. The presence of reduced muscle tone also had a negative impact on the child's functioning in the physical (p = 0.036), emotional (p = 0.011), psychosocial (p = 0.027) and overall QOL domains (p = 0.023). Overall, our results showed that the quality of life of children with trisomy 21 is impaired. There was a positive association between the child's QOL and the QOL of their parents, as well as the general functioning of the child's whole family. For this reason, an improvement in the QOL of parents and the family functioning is closely related to an increased QOL of the child. The continuous deepening of knowledge of QOL in individual trisomy 21 management allows for better preparation and ongoing care for the patients concerned.

Quality of life of children with acute lymphoblastic leukemia

Background Acute lymphoblastic leukemia (ALL) is the most common cancer in children worldwide, which requires long treatment. This condition and its subsequent treatment change the body's physiology, reducing children’s quality of life. &#x0D; Objective To describe the quality of life in children with acute lymphoblastic leukemia in Java, Indonesia.&#x0D; Methods This descriptive study with a cross-sectional approach included parents who had children with ALL at three referral hospitals in Java, Indonesia, between January 2021 and May 2022. We recruited 188 mothers or fathers who accompanied their children for follow-up visits or hospitalization. Children’s quality of life as the primary outcome was evaluated by parent proxy using the PedsQL 3.0 cancer module.&#x0D; Results Most parents were mothers (81.9%); parents’ ages ranged from 22 to 59 years. The mean age of children was 7.63 (SD 3.85) years, with 63.3% boys and 147 (78.2%) treated in maintenance phase during the study. The mean overall children’s QoL score was 84.37 and it classified as high (73.9% of subjects), no children had very low QoL. The lowest mean sub-scale QoL score was in procedural anxiety (72.25), whereas the highest sub-scale score was in communication (91.56). &#x0D; Conclusion There is an improvement in QoL of children with ALL in Indonesia. However, the procedural anxiety sub-scale requires more interventions to reduce anxiety and alleviate pain during invasive procedures.

Assessment of Health-Related Quality of Life in Children with Totally Corrected Tetralogy of Fallot in Sulaymaniyah, Iraq

ABSTRACT Purpose This study examined the health-related quality of life among children who have undergone surgery for tetralogy of Fallot (TOF) compared to healthy children. Design Cross-sectional study Methods The study was carried out at Children’s Heart Hospital and Primary Healthcare Centers in Sulaymaniyah, Iraq, between July 1, 2022, and November 1, 2022. The study involved 400 participants, comprised of 200 parents of healthy children and 200 parents with children with repaired TOF. Data collection involved utilizing a 5-point Likert Scale questionnaire administered through direct face-to-face interviews with the parents of the children. Findings Children with surgically repaired TOF had markedly lower mean scores (P ≤ 0.001) in the overall dimension of QoL (Mean rank = 137) when compared to healthy children (Mean rank = 263). Furthermore, it was observed that children with repaired TOF had significantly lower mean scores (P < 0.001) across all subdimensions of QoL compared to their healthy counterparts. In the subject of children with repaired TOF, the impact of maternal education (illiterate and lower education) on overall QoL was found to be highly significant (P < 0.001). In addition, children with repaired TOF from lower socioeconomic status (SES) families had worse quality of life than those from medium and high SES families, with a p-value <0.001. Conclusions Repaired TOF children exhibited notable deficiencies across all dimensions of QoL compared to healthy children. Moreover, SES emerged as a significant determinant influencing the QoL outcomes of repaired TOF children. Clinical evidence Despite undergoing corrective surgery for TOF, the QoL in children with repaired TOF continues to be lower than that of their healthy counterparts. Notably, the economic and educational status of the family significantly impacts the way these children perceive and experience their QoL. This finding underscores the critical significance of factoring in socioeconomic elements when addressing the well-being of this particular group of children.

Quality of life in Children with Cerebral Palsy

Cerebral palsy refers to a non-progressive brain disorder that affects the development of brain in developing infant and reduces the quality of life. Quality of life (QOL) is assessed using the CPQOL tool. Objectives: To assess the quality of life of children with CP. Methods: A cross-sectional study was conducted at the National Institute of Rehabilitation Medicine, Islamabad during Oct-2022 to Mar-2023. The sample was raised using slovin’s formula and non-probability convenient sampling technique was used. Data were collected using standard CP-QOL tool. All types of CP diagnosed cases both gender, presence of a caregiver and an age range of 4 to 12 years were included. Patients with non-availability of a caregiver and presence of any other illness not associated with CP were excluded. Results: Out of 129 participants, 105 were included on the basis of inclusion and exclusion criteria. The mean ± SD of patients overall score came out to be 46.83 ±9.75. CPQOL score of males were 47.36±9.96 and of female was 46.19±9.56. CPQOL score of age 4-6years was 45.12±10.58, 7-9 years was 47.70±9.15 and 10-12 years was 49.21±8.54 while overall CPQOL score of children with diplegic CP was 48.38±9.11, hemiplegic CP was 48.66±7.74, quadriplegic CP was 37.92±11.16. Conclusions: study showed that among both genders, females had poor QoL than males. This study also concluded that quadriplegic children had poor QoL than any other types of cerebral palsy. The overall status of QoL of children having Cerebral Palsy was low.

Cognitive behavioural therapy for functional abdominal pain disorders in children and adolescents: A systematic review of randomized controlled trials

AimAlthough Cognitive behavioural therapy (CBT) potentially holds efficacy in addressing functional abdominal pain disorders (FAPDs) amongst children and adolescents, the persistent efficacy is uncertain. MethodsWe searched three databases to identify related randomized controlled trials (RCTs). Meta-analysis was performed using RevMan and Stata. Subgroup analyses were mainly conducted based on follow-up time. The GRADE approach was used to evaluate the certainty of the evidence. ResultsA total of 14 RCTs evaluating 858 patients were included. All RCTs were rated as having a high risk of bias. Compared with control groups, CBT was associated with improvement of general functional impairment (standardized mean difference (SMD) = -0.77, 95% CI [-1.12, −0.42], p < 0.05), higher treatment success (relative risk (RR) = 2.35, 95% CI [1.50, 3.69], p < 0.05), improvement of abdominal pain symptoms (SMD = −0.48, 95% CI [-0.73, −0.23], p < 0.05), QoL (SMD = 0.42, 95% CI [0.20, 0.64], p < 0.05), and psychological states (SMD = −0.95, 95% CI [-1.62, −0.27], p < 0.05). ConclusionThis meta-analysis provides low to moderate quality evidence that CBT could significantly improve clinical outcomes and QoL for children and adolescents with FAPDs with improvement persisting until short-term follow-up. However, there were discrepancies regarding CBT's effects at mid- and long-term follow-up across different outcomes. More high-quality and longer-duration studies are thus warranted to explore the effectiveness of CBT in the future. Systematic review registration on prosperoCRD42022369353.

P357 Psychological study of the relationship between pain perception and fear, anxiety and quality of life in children with cystic fibrosis

The aim of this research was to investigate the relationship between fear of pain, pain perception, anxiety and QoL in cystic fibrosis children during care procedures. Recent advent of CFTR modulators induced a major advance in the disease, both at the somatic level and in terms of patients’ quality of life (QOL). Indeed, by reducing the need for care, the presence of a CFTR modulator treatment could have an effect on pain perception, fear of pain, anxiety and QoL of patients.

Really Asymptomatic? Health-Related Quality of Life and Objective Clinical Foot Characteristics among 5-10-Year-Old Children with a Flexible FlatFoot.

In total, 351 children were enrolled in this cross-sectional study-160 children with asymptomatic FF and 191 controls (children with normal feet). The children and their parents completed the Paediatric Quality of Life Inventory (PedsQLTM 4.0). The objective foot characteristics included clinical foot posture measures, footprints, general hyperlaxity, and X-ray measurements. Children with asymptomatic FF had a significantly lower QoL (overall and all four dimensions). The parents' assessment of the QoL of their children with asymptomatic FF in most cases was lower compared to their children's self-reported QoL. Moreover, almost all clinical foot measures also had significantly worse profiles among asymptomatic FF cases compared to the controls. This was observed with the Foot Posture Index-6 (FPI-6), the navicular drop (ND) test, the Chippaux-Smirak Index (CSI), Staheli's Index (SI), the Beighton scale, and radiological angles (except the talo-first metatarsal angle). The findings suggest that asymptomatic FF not always reflects a normal foot development. This condition is related to decreased health-related quality of life, so the 5-10-year-old children's and their parents' complaints should be considered more closely in identification, treatment, and monitoring plans.

Food Allergies and Quality of Life among School-Aged Children and Adolescents: A Systematic Review.

Recently, besides the focus on the medical diagnosis and therapeutic interventions for food allergy (FA), the psychosocial aspects of this frequent condition have also been investigated. The current systematic review aimed to explore and synthesize the scientific evidence published from January 2015 to April 2022 on Health-Related Quality of Life (HRQoL) among children and adolescents with FAs. Twenty-eight research studies were included in the review, which was conducted on three databases (PubMed, Scopus and Cochrane Library). In most studies, the scores indicate an average level of HRQoL for children and adolescents with FAs, with girls and older children being more negatively affected than boys and younger ones, respectively. Few studies compared HRQoL between children with FA and healthy children, with 3 of them showing worse HRQoL for children with FAs. Immunotherapy has been found to improve the QoL of children with FAs. Anaphylaxis history, number of FAs, additional allergies, number and severity of symptoms were identified as the main factors with a negative impact on QoL. More comparative studies on the HRQoL of children and adolescents with FAs and healthy populations or children with other chronic diseases are required in order to improve QoL of children with FAs.

Quality of Life of Children age from (8- lessthan13) years with Acute Lymphocytic Leukemia Undergoing Chemotherapy at Hematology Center in Medical City

Objective (s): To assess the QoL of children age from (8- lessthan13) years with acute lymphocytic leukemia undergoing chemotherapy and to find out the relationship between the QoL of children with acute lymphocytic leukemia and their illness history.&#x0D; Methodology: A descriptive study included (40) children with acute lymphocytic leukemia who were ranged between (8 - less than 13 years) at the Hematology Center in Medical City for the period from 4th March 2021 to 1st September 2021. The sample was non-probability (purposive) sample of children (male and female). A questionnaire designed with 2 main parts was used. The first part focused on sociodemographic characteristic for children. The second part, which consisted of four domains, focused on the quality of children with acute lymphocytic leukemia. The data were analyzed by applying statistical methods (descriptive and inferential) that were applied by using SPSS version 20.&#x0D; Results: The study's findings that children aged from 8 to less than 13 years have moderate effects on all domains of the quality of life in which 90% of them are showing a moderate level in the physical functioning domain,70% are showing a moderate level in the emotional functioning domain, in regard to the social functioning domain 52.5% are showing a moderate level and 67.5% of them are showing a moderate level in school functioning domain.&#x0D; Conclusion: According to the finding of the present study, the researchers concludes that acute lymphocytic leukemia is more prevalent in males than females. In children aged 8 to less than 13 years, all domains of quality of life are moderately affected.&#x0D; Recommendations: The study recommended that all children with ALL and their parents get counseling and education programs about leukemia, medical care, efforts to overcome side effects, and nutrition, all of which help to improve the children's quality of life.

P1737: QUALITY OF LIFE IN CHILDREN WITH BETA-THALASSEMIA MAJOR: A CROSS-SECTIONAL STUDY IN CHINA

Background: Thalassemia is a hereditary hemolytic anemia disease. Most Chinese thalassemia patients can be diagnosed in initial episode, due to the fact that the prevention and treatment of thalassemia has achieved remarkable effects in recent two decades. The research of new therapies have also made considerable progress. Patients with transfusion-dependent thalassemia, especially those with β-Thalassemia Major(β-TM), require regular blood transfusions and iron chelation therapy. This places a large burden on patients and their families. The burden is not only physical pain, but also includes psychological and social dimensions. The unmet needs of the patient population are also worth studying. However, the overall QoL of Chinese thalassemia patients and its affecting factors remain unclear. Aims: The aim of this study was to investigate the level of QoL and ascertain its influencing factors in children with β-TM in China. Methods: The study data came from a nationwide and cross-sectional survey of patients with thalassemia in China (NCSTC, Ethical ID: IIT2021045-EC-1). Participants were recruited from 9 provinces and 1 municipality. Recruitment was based on the Beijing AngelMom Charity Foundation. Multistage stratified cluster sampling method was used for the sampling. The study used a web-based questionnaire to collect the QoL of children and the burden level of caregivers. The QoL was assessed using the Pediatric Quality of Life Inventory (PedsQL4.0), which contained 23 items in 4 dimensions (physical, emotional, social, and school functioning). The caregiver’s burden level was assessed by Zarit Burden Interview-22 (ZBI-22). The multiple linear regressions were used to analyze. Results: A total of 519 children (aged 2-17 years) with β-TM were obtained from NCSTC. The mean of PedsQL total score was 65.7 (standard deviation, 18.1). In the multi-adjusted linear regression model, participants with younger age (2-4 years= 72.1; 5-7 years= 67.8; 8-12 years = 64.3; 13-17 years= 60.5), without complications (with complications vs. no complications: 61.6 vs. 75.4), shorter course of disease (< 8 years vs. s 8 years: 67.6 vs. 63.8), without iron chemotherapy (with iron chemotherapy vs. without chemotherapy: 64.9 vs. 68.8), with lower caregiver burden level (0-20: 79.3, 21-40: 68.5, 41-60: 57.7, 61-80: 46.1), and receive transplantation treatment (with HLA transplantation vs. without HLA transplantation: 71.9 vs. 64.0) have higher PedsQL total score. The younger age, without complications, with shorter course of disease, with lower caregiver burden level, and receive transplantation treatment were all related to higher performance of physical, emotional, social, and school functioning (Figure 1). Image:Summary/Conclusion: The health-related QoL assessed by PedsQL scores in Chinese children with β-TM were lower than that in previous studies. Multiple factors were associated with the QoL of Chinese children with β-TM, and should be comprehensively paying attention to physical, emotional, social, and school functioning in β-TM patients.

QOL-16. A 6-year longitudinal study of neurocognition in children treated for a brain tumor

Long-term neurocognitive difficulties in children treated for a brain tumor are well documented and known to be affected by treatment. However, longitudinal studies of these neurocognitive difficulties are scarce. In the present study, we investigated the impact of radiotherapy (RT) on the evolution of neurocognition between different consecutive time points after diagnosis, and throughout treatment and survivorship. This study included 69 children diagnosed with a brain tumor at the University Hospitals Leuven who completed a comprehensive neuropsychological test battery (intelligence, memory, visuomotor functioning, and QoL) on at least three consecutive time points (2-year interval). Of all patients, 40 completed the test battery at 4 time points. The first assessment was conducted at the earliest possible moment after diagnosis and before the start of any adjuvant therapy. Mean age at diagnosis and first assessment were 7.75 and 7.92 years, respectively. The most common diagnoses were pilocytic astrocytoma (n=33) and medulloblastoma (n=11). 29.0% of the children received local RT and 15.9% received craniospinal RT. A repeated measures analysis with cranial irradiation (no, focal, craniospinal) as between-subjects factor and age at diagnosis as covariate demonstrated a significant interaction effect between time and type of irradiation for both overall intelligence (p=0.007) and QoL (p=0.006) for children with three and four assessments. Children who received craniospinal irradiation demonstrated a significant decline in overall intelligence and a significant worsening of QoL. For the non-irradiated group, an improvement of QoL was observed. For processing speed, a significant time effect was found for children with three and four assessments (p<0.001), with a significant improvement for the overall group. The results of this longitudinal study demonstrated diverse longitudinal trajectories. Children who received craniospinal irradiation are most often confronted with intellectual decline and worsening of QoL.

Health-related quality of life of Hungarian children and adolescents with disabilities

This study presents a comparative analysis of the HRQOL (health related quality of life) of Hungarian children and adolescents with disabilities. This empirical research was carried out during the academic years of 2016/2017, 2017/2018, and 2018/2019. Gathered via the KIDSCREEN-27 questionnaire, the data provide information on the HRQOL of 2,631 children with typical development (TD) (1,411 boys and 1,220 girls, mean age 14.88±2.68 yrs) and 1,056 children with a disability (diagnosed with special educational needs – SEN) (702 boys and 354 girls, mean age 15.72±2.6 yrs). QOL was examined from various aspects. Results in the various subsamples were first compared to Hungarian reference data. Then, an analysis of variance (ANOVA) was performed to detect differences between the subsamples in the five dimensions of QOL. When comparing the QOL of Hungarian children with SEN to Hungarian reference data, we found that only children within an autism spectrum disorder (ASD) had low HRQOL in the dimension of social support and peers. The comparison of the T-values characterising the HRQOL of the subsamples showed that children with other psychological developmental disorders (OPDD), those with ASD, and children with hearing impairment (HI) experience significantly poorer HRQOL T-values in several dimensions compared to children with TD or other disabilities. The physical well-being of children with OPDD is lower than that of students with TD or a mild intellectual disability (MID). In addition, children with OPDD show significantly lower levels of QOL in the school environment dimension compared to other subsamples (children with physical disabilities /PD/, with MID, or with low vision /LV/). Students with HI or ASD showed lower rates of QOL compared to other subsamples in the dimensions of autonomy and parent relations, social support and peers, and school environment. The lower QOL found in the different dimensions will help experts plan and determine the foci of intervention.

Development and Evaluation of the Quality of Life Scale for Children With Visual Impairments in China.

BackgroundVisual impairments related to non-correctable vision loss, including blindness and low vision, have been consistently shown to lower a person's health-related quality of life. This study assessed the reliability, validity, and discrimination of the Quality of Life Scale for Children with Visual Impairments (QOLS-CVI) in China.MethodsThe Pediatric Quality of Life Inventory™ 4.0 and World Health Organization Quality of Life-Disability Scale for physical disability were selected to define conceptual frameworks and item libraries based on relevant existing studies. According to two rounds of expert consultations and group discussions, some items were modified, and the draft scale was developed. Two item selection processes based on classical test theory and item response theory were used to conduct a preliminary survey and a formal survey in special schools in Shanxi and Hebei Provinces. Finally, the reliability and validity of the quality of life scale for visually impaired children in China were verified.ResultsThe final QOLS-CVI consisted of 38 items, 10 subdomains, and 6 domains. Reliability was verified by Cronbach's alpha coefficient, split-half reliability, and test-retest reliability (Cronbach's alpha for the full scale, 0.841; split-half reliability, 0.629; and test–retest reliability, 0.888). The validity results showed that the multidimensional scale met expectations: exploratory factor analysis and confirmatory factor analysis indicated good fitting models for children with visual impairments.ConclusionsThe QOLS-CVI was determined to be reliable and valid and to have strong feasibility and effectiveness. This scale can be used as an evaluation tool to study the QOL and social-participation ability of children with visual impairments.