PedsQL Questionnaire Research Articles

The QUALITY OF LIFE IN ADOLESCENT DURING COVID 19 PANDEMIC

Background : Assessment of quality of life in children is a useful indicator of overall health because it encompasses information about children's physical and mental health. Managing the existing environment and adhering to current constraints due to Covid-19 can be especially difficult for children and adolescents because these conditions can be regarded as incompatible with their developmental tasks. The Pediatric Quality of Life Inventory (PedsQL) is a tool designed to assess children's quality of life based on age, maturity, and cognitive development. While self-report is the gold standard for measuring perceived PedsQL, there may be occasions when the kid is too young, too sick, or too tired to complete PedsQL instrument, in which case a parent-proxy report may be required.
 Methods : An analytic observational study using a cross-sectional design involve three elementary schools in the Jimbaran area, Badung, Bali. The research was conducted at Udayana University Hospital in July 2022. Detailed explanations about the context and how to fill out the PedsQL form were given to students and their parents. The students and parents fill out PedsQL forms in separate rooms. The PedsQL questionnaire used was the Indonesian version. Concordance between self-report and parent-proxy was evaluated using the Wilcoxon paired sign rank test. Intraclass correlation coefficients (ICC) to assess parent and child agreement.
 Results : Amongst 189 children, median age was 11 years (range 11–13 years). There was no difference in PedsQL between self-report and parent-proxy in overall and subscales functioning domain. Physical, emotional, social, and school functioning all had intraclass correlation coefficients of 0.85, 0.83, 0.79, and 0.88, respectively. Low energy (physical functioning), feel afraid or scared and feel angry (emotional functioning), and can’t do things that children his age do (social functioning) were found different among factor loadings. School functioning factor loadings were found similar.
 Conclusion : This study shows a good agreement and no significant difference in overall and subscale scores between children's self-report and parent-proxy reports. Although significant differences were found when examining each factor loadings in each component.

Health-related quality of life of children with neurofibromatosis type 1: Analysis of proxy-rated PedsQL and CHQ questionnaires

This study aims to (1) investigate health-related quality of life (HRQoL) in children with Neurofibromatosis Type 1 (NF1) using the Pediatric Quality of Life inventory (PedsQL) and the Child Health Questionnaire (CHQ); and (2) compare the psychometric properties and content of these questionnaires in NF1 patients. PedsQL and CHQ proxy-reports were administered to parents/caregivers of 160 patients with NF1 aged 5-12 years. HRQoL scores were compared with Dutch population norms using independent t-tests. Psychometric properties (feasibility and reliability) were assessed by floor/ceiling effects and Cronbach's alpha coefficient. A principal component analysis (PCA) with varimax rotation was performed to identify the data's internal structure. By content mapping, we identified unique constructs of each questionnaire. Proxy-reported HRQoL was significantly lower on all PedsQL subscales for children aged 5-7 years, and on 4/6 subscales for children aged 8-12 years compared to norms. Significantly lower HRQoL was reported on 6/14 CHQ subscales (children 5-7 years) and 9/14 subscales (children 8-12 years). The PedsQL showed slightly better feasibility and reliability. The PCA identified two components, representing psychosocial and physical aspects of HRQoL, explaining 63% of total variance. Both questionnaires showed relevant loadings on both components. The CHQ subscales concerning parents and family were considered unique contributions. Proxy-reported HRQoL of children with NF1 is significantly lower compared to norms on multiple domains. Both questionnaires adequately measure HRQoL in children with NF1. However, the PedsQL has slightly better psychometric properties, while the CHQ covers a unique dimension of HRQoL associated with disease impact on parents and family.

ФИЗИЧЕСКОЕ И ДВИГАТЕЛЬНОЕ РАЗВИТИЕ ДЕТЕЙ, ЛЕЧИВШИХСЯ ОТ ОНКОЛОГИЧЕСКИХ ЗАБОЛЕВАНИЙ, КАК ФАКТОР, ВЛИЯЮЩИЙ НА СВЯЗАННОЕ СО ЗДОРОВЬЕМ КАЧЕСТВО ЖИЗНИ

Article represents the results of the research undertaken to prove the relationship between the physical conditions of patients treated for oncological diseases (OD) and the decrease in their health-related quality of life (HRQOL). Materials and methods used: 1564 children aged 6 to 18 y/o who have undergone rehabilitation at the “Russkoye pole” Clinical Rehabilitation Research Center for patients in remission with the National Scientific and Practical Center for Pediatric Hematology, Oncology and Immunology named after Dmitry Rogachev located in Grishenki village, Chekhovsky District, Moscow Oblast, Russia, after the complex treatment for OD from 2018 to 2021 participated in the research, of which 864 boys and 700 girls. The average age of the patients was 10.6+/-3.4 y/o, the average remission period was 5.4+/-2.7 years. The comparison group consisted of healthy siblings aged 6 to 18 y/o who stayed at the same facility and during the same period, a total of 238, of which 111 boys and 127 girls. The average age of the examined siblings was 10.2+/-2.4 y/o. The indicators of physical condition were tested as follows: anthropometry, strength endurance of muscles, tolerance to physical loads, development of motor skills. The PedsQL questionnaire was used for the HRQOL assessment. In order to build the mathematical models and to evaluate the statistically significant influence of factors, the classical linear regression models were used. The analysis of the relationship between groups of variables was carried out with the canonical correlation analysis. Comparison of children treated for OD and healthy children was carried out using the Welch's t-test. Results: all of the HRQOL indicators in all gender and age subgroups in children with OD were statistically significantly lower compared to healthy siblings. The most significant differences were obtained in the scale of physical functioning (p=0.001). A direct moderate relationship was found between HRQOL and a factor indicator for the physical condition (rcc=0.53), a direct moderate-weak relationship with a generalized measure of strength endurance (rcc=0.315) and a direct moderate relationship with motor skills (rcc=0.5). It was also found that a lag in the formation of basic motor skills had the greatest negative impact on the HRQOL of children treated for OD. Conclusion: the results of the research do confirm the role of physical condition in improving the patients’ quality of life. Continued research would allow developing a new tool for assessment of the effectiveness of physical rehabilitation for patients in this category.

Health Related Quality of Life (HRQOL) in pediatric population after surgical intervention in traumatic lower limb injuries: A prospective cohort.

To assess health related quality of life (HRQOL) of children who had undergone surgical intervention after lower limb trauma. A prospective observational study was conducted at KEMU and UCHS, from September 2021 to June 2022. Fifty children aged 5 to 12 years who had undergone surgical intervention for lower limb trauma were included. Patients whose parents couldn't understand Urdu or English, or with polytrauma, needing amputation and/or comorbidities were excluded. Another fifty-school going, age matched children were enrolled as controls. After informed consent, two responses from participants and parents on PedsQL questionnaires were recorded, first one week after discharge and second after six months, assessing age specific quality of life in four domains (physical, emotional, social, school). Impaired HRQOL was defined as a score that was more than 1SD below the mean of healthy sample. Baseline HRQOL scores were significantly lower in patients and parents reported data taken at one week, overall difference of 39.13 in total HRQOL scores (effect size, d 2.76). Difference of 39.86 was observed between baseline and follow-up data taken from parents with the highest effect size (d=3.34) in physical functioning scores. There was a significant difference of 10.07 between the total HRQOL scores of patients on follow up and controls, and HRQOL patients' scores were higher than controls across all domains. Parent reported scores were less than those reported by children in almost all cases. HRQOL of children at discharge after management of lower limb trauma was lower than age-matched control group. It, however, significantly exceeded controls' scores after six months showing complete recovery.

Quality of life in children with asthma compared to healthy children: a case-control study

Objective Asthma is a chronic condition characterized by episodic wheezing, cough, and shortness of breath resulting from airway hyperresponsiveness and inflammation. Over 300 million people are affected worldwide, and its prevalence is increasing by 50% every decade. Assessing the quality of life in children with asthma is fundamental, as consistently poor health-related quality of life is associated with poorly controlled asthma. This study is aimed to evaluate and compare factors associated with HRQOL between healthy controls and children with asthma. Methods In the current case-control study, 50 children aged 8–12 years with asthma (cases) enrolled at outpatient hospital clinics by a trained pediatric allergist/immunologist (A.P.) and matched with 50 healthy controls by age and sex. All enrolled subjects were interviewed utilizing the PedsQL questionnaire to assess health-related quality of life; also, patient demographics, including age, sex, and family income status, were obtained from a questionnaire. Results A total of 100 children comprising 62 males and 38 females with a mean age of 9.63 ± 1.38 years, participated in this study. The average score of children with asthma was 81.63 ± 9.38, and the average score for healthy participants was 89.58 ± 7.91. We found that asthma was associated with a significant drop in health-related quality of life in this sample. Conclusions The results indicated that the PedsQL score and its subscales, except social functioning, were significantly higher in children with asthma compared to healthy ones. Also, SABA use, nocturnal symptoms, and asthma severity are negatively related to the health-related quality of life.

5599344 IMPACT OF HOSPITAL ADMISSION FOR VASO-OCCLUSIVE CRISIS ON HEALTH-RELATED QUALITY OF LIFE IN CHILDREN WITH SICKLE CELL DISEASE

Background: Sickle cell disease (SCD) is the most common inherited hemoglobinopathy characterized by chronic hemolytic anemia, vaso-occlusive crises (VOCs), sensitivity to bacterial infections and multi-organ failure. Painful VOCs may severely impair the life of children with SCD and their families, resulting in affected health-related quality of life (HRQoL). Currently, we lack insight in how HRQoL changes over time following hospitalization for VOC in children with SCD. Aims: The aim of this study is to evaluate the longitudinal impact of hospital admission for VOCs on the health-related quality of life in children with SCD up to one year after hospitalization. Methods: In this retrospective cohort study, children between the age of 8 and 18 years with SCD treated at the Amsterdam University Medical Centers were included. As part of standard care, once a year, these children completed patient reported outcomes measures on the KLIK PROM portal (www.hetklikt.nu). HRQoL was measured with the Pediatric Quality of Life Inventory (PedsQL). This questionnaire consists of 23 items covering the following 4 domains: physical, emotional, social and school functioning. The score ranges from 0-100, and a higher score indicates better HRQoL. Data were analysed from the electronic medical records of patients, who filled out at least two PedsQL questionnaires between 2012 and 2021. The effect of the occurrence and frequency of hospital admissions for VOCs on the HRQoL was evaluated 3, 6, 9 and 12 months following hospitalization using linear mixed model adjusted for age and SCD genotype. Results: In total, 94 children were included with a median age of 11.8 years (IQR: 9.3 – 14.1). The total follow-up duration was 451 patient-years with a median follow-up time of 4.0 years (IQR 2.0 - 6.0). The PedsQL was completed 455 times in total. The majority of the included patients was male (64%), while 57 patients (61%) had the severe genotype: HbSS or HbSβ0 thalassemia. The median total PedsQL score was 78 points (IQR 71-85). During follow-up, 37 patients (41%) had been admitted to the hospital for a VOC. Hospitalization for VOC in the last 12 months led to a decrease of 3.2 points (p=0.053) in HRQoL as compared to patients without hospitalization. Recurrent admissions for VOC in the previous 12 months further decreased HRQoL with 2.3 points for every additional admission (p=0.035). The significantly affected domains were physical functioning at 6, 9 and 12 months, and school performance 12 months after hospitalization. Conclusion: The negative effects of hospital admission for VOC on HRQoL aggregate and persist for up to 12 months after hospitalization. These findings highlight the importance of using patient-reported outcomes in children with SCD to screen for the need for extra support after hospitalization for VOCs to optimize HRQoL.

5613512 ASSESSMENT OF CHRONIC PAIN IN CHILDREN AND ADOLESCENTS WITH SICKLE CELL DISEASE IN ITALY: PRELIMINARY RESULTS OF A PROSPECTIVE STUDY C.PIATTELLINI1, V.MUNARETTO2, G.REGGIANI2, I.BAIDO2, E.MARAN2, A.BIFFI2, F.BENINI1, A.ZANIN1 AND R.COLOMBATTI2

Context: Children with sickle cell disease (SCD) suffer from episodes of intense pain such as vaso-occlusive crisis (VOC) that can increase in severity throughout life, leading to a poor quality of life. In addition to epVOCs, patients with SCD can also report recurrent VOCs even on daily basis and chronic pain which can be defined as pain that presents on most days for over over six months. Chronic pain in SCD has profound consequences for the patient: it is often associated with depression and anxiety and can lead to challenges with sleep, and chronic fatigue that impair quality of life. In spite of its burden, chronic pain is difficult to diagnose early for several reasons. In Italy, there is no current data on the prevalence and characteristics of chronic pain in the pediatric population with SCD. Objectives: 1) To evaluate the prevalence and characteristics of chronic pain in a large pediatric, adolescent and young adult SCD cohort (6-24 years) using the American Pain Society Pain Taxonomy (AAPT) Diagnostic Criteria for Chronic Pain in SCD to standardize each patient’s clinical information and using also the PROMIS and PedsQL domains for investigating pain and its effects on health related quality of life (HRQOL); 2)To compare the PROMIS and PedsqL questionnaires to investigate how chronic pain affects quality of life (QoL).A secondary outcome will be to assess if these tools can help to identify potential patients with chronic pain. Methods: The process included multiphase qualitative methodology between the Pain Team and the sCD Team of the AOP. A literature review on SCD was conducted to generate domains of interest for the individual interviews. PROMIS questionnaire investigates Global Health of the patient(7 items),Pain Sensory (8 items),Affective (8 items), Behavior (8 items), Mobility upper extremity (8 items), Strength (4 items), Physical Activity (4 items),Physical stress (4 items), Psychological stress (4 items),Sleep Disturbance (4 items)Sleep Related Impairment (4 items),Anger (5 items) and PedsQL for sickle cell disease. Results: We evaluated 43 patients with SCD ages 6–24 years from May 2021 to September 2022 referred to the Padova SCD reference center.Patients were distributed in 3 classes according to their age (19 (44%) between 6-13 years, 14 (32%) between 13-18 years and 10 (24%) between 18-24 years, 44% were female and only 5 (12%) of them had bone marrow transplants (TMO).Hydroxyurea was treatment regimen of 37 patients, 7 patients among these were on crizanlizumab and 4 subjects in our cohort are on chronic transfusion therapy.According to the American Pain Society Pain Taxonomy (AAPT) criteria for chronic pain in SCD (tab below[1] 16 (37%) patients with presumed chronic pain were identified all between the ages of 13 and 24 years old.Following the scoring of dimensions of Pedsql 12 subjects belong to the category of “excellent quality of life”, 12 to “good quality of life”, 5 to “fair quality of life”, 3to “modest quality of life”, 11 to “poor quality of life. Of the entire patient cohort, 9 fall within the criteria defined by AAPT and thus can be considered to have chronic pain.Further analyses are underway for PROMIS. Conclusions: In our cohort a growing population of SCD adolescents present clinical features of chronic patin These data need to be investigated in further studies thanks a close and muldisciplinary collaboration between Pain services and SCD haematological centers.Reference 1. Dampier C, Palermo TM, Darbari DS, Hassell K, Smith W, Zempsky W. AAPT Diagnostic Criteria for Chronic Sickle Cell Disease Pain. J Pain. 2017 May;18(5):490-498. doi: 10.1016/j.jpain.2016.12.016. Epub 2017 Jan 5. PMID: 28065813.[1]

Health Behaviors in School-Age Children and Quality of Life

Introduction: Health behaviour is commonly found such as smoking, consuming alcohol, unhealthy eating behaviour, physical activity, perception of school, violence and bullying currently are associated with better quality of life. School-age Children are at risk to adapt their environment in doing healthy risk behaviors. Objective: To describe the health behaviors and examine the association between health behaviour and their quality of life.Methods: Health behaviour (i.e., eating habit, physical activity, smoking, drinking alcohol, sexual behaviour, violence, school behaviour, and social life) were examined among 200 School-age Children in a Junior High School in Teluk Naga, Tangerang, Indonesia using Indonesian-Health Behaviour School-age Children questionnaire, and also using translated PedsQL Questionnaire that developed for Pediatric quality of Life, which measures 4 domains of quality of life (physical functions, mental status, social and school functions). Results: School-age children showed high prevalence of eating habit (n = 130), less physical activity (n= 77), smoking (n = 47), drinking alcohol (n = 55), sexual behaviour (n=62), violence (n= 90), low economy status (n= 65), school perception (n= 43), and difficulties in social life (n= 63). In addition, this study revealed for the quality-of-life school-age children have prevalence in good physical functions (47%), mental status (42%), social (58%) and school functions (43.5%). In a multivariate model, health behaviours (physical activity, smoking, sexual behaviour, social activity and violence) (P<0.05) were dominantly correlated with quality of life. Conclusion: The current study provides significant information on how health risk behaviour influenced the quality of life, and this study has the potential to develop better health education and promotion programs in school-age children.

A Comparison of Preference-Based, Generic and Disease-Specific Health-Related Quality of Life in Pediatric Inflammatory Bowel Disease.

Generic preference-based HRQOL assessments used expressly for economic evaluation have not been examined in pediatric Crohn's disease (CD) and ulcerative colitis (UC). The objective was to further assess the construct validity of preference-based HRQOL measures in pediatric IBD by comparing the Child Health Utility 9 Dimensions (CHU9D) and Health Utilities Index (HUI) to the disease-specific IMPACT-III and to the generic PedsQL in children with CD and with UC. The CHU9D, HUI, IMPACT-III and/or PedsQL were administered to Canadian children aged 6 to 18 years with CD and UC. CHU9D total and domain utilities were calculated using adult and youth tariffs. HUI total and attribute utilities were determined for the HUI2 and HUI3. Total scores for IMPACT-III and PedsQL were determined. Spearman correlations were calculated between generic preference-based utilities and the IMPACT-III and PedsQL scores. The questionnaires were administered to 157 children with CD and 73 children with UC. Moderate to strong correlations were observed between the CHU9D, HUI2, HUI3 and the disease-specific IMPACT-III or generic PedsQL. As hypothesized, domains with similar constructs demonstrated stronger correlations, such as the Pain and Well-being domains. While all questionnaires were moderately correlated with the IMPACT-III and PedsQL questionnaires, the CHU9D using youth tariffs and the HUI3 were most strongly correlated and would be suitable choices to generate health utilities for children with CD or UC for the purpose of economic evaluation of treatments in pediatric IBD.

Assessment of quality of life in children with epilepsy in Oman

PurposeThe study aims to describe the quality of life (QoL) in Omani children with epilepsy at Sultan Qaboos University Hospital, Oman.MethodsOne hundred and one Omani children, with an age range from 5 to 18 years, diagnosed with epilepsy were enrolled in the study over 3 months. Descriptive epidemiology was used to characterize QoL in these children. QoL was measured using the PedsQL (4.0) questionnaire, a 23-item child and parent report questionnaire. Analysis of variance (ANOVA) was used to compare mean QoL scores, and agreement between the QoL reports of children and parents was evaluated using Spearman’s rho; while, Multivariate analysis of variance (MANOVA) was performed to determine differences in subscale ratings.ResultsFactors affecting QoL included family status, income level, social security coverage, type of treatment, seizure frequency, age of onset, and seizure-free duration in years. Children between 5 and 7 years and females, in general, were most affected, as reflected by the overall QoL subscale. Consistency between the children's self-reports and parent proxy reports on the PedsQL™ was moderate to low.ConclusionOmani children with epilepsy have poor QoL, and their psychosocial function is severely affected. Therefore, QoL should be an important outcome measure in managing children with epilepsy rather than just seizure control.

Disagreement between mothers' and fathers' rating of health-related quality of life in children with cancer

PurposeSerial assessment of health condition based on self-report made by children and their proxies has consistently shown a lack of congruence. The study explored the discrepancies between mother’s, father’s, and children’s reports on health-related quality of life (HRQOL) during the first two months of pediatric cancer treatment.MethodsIn this cohort study, children and parents completed the generic and cancer-specific Pediatric Quality-of-Life Inventory (PedsQL) questionnaires at initial diagnosis and in the subsequent months. Evaluation of discrepancies included intraclass correlations between mother–child and father–child dyads at different domain levels.ResultsThirty-six children with a diagnosis of cancer between May 2020 and November 2021 and their parents were included in this study. At diagnosis, mother–child dyads showed better agreement on more domains of the PedsQL Generic Core Scale than father–child dyads; moderate agreement persisted for both parents at subsequent time points on the physical domain. The disease-specific PedsQL Cancer Module revealed moderate and better agreement for mother–child dyads during active cancer therapy. In particular, agreement of mother–child dyads was pronounced for domains such as worry (0.77 [95% CI 0.52–0.89, P < 0.001]), whereas fathers tended to overestimate the child’s symptom burden for most of the remaining domains of the PedsQL Cancer Module.ConclusionThis cohort study shows that both parent proxy reports can provide valid information on child’s HRQOL, but that fathers tend to overestimate, particularly for non-observable domains. Proxy reports derived from mothers more closely agreed with children’s HRQOL and might be more weighted, if there is uncertainty between parents.

The Impact of Hospital Admission for Vaso-Occlusive Crisis on Health-Related Quality of Life in Children with Sickle Cell Disease

Background: Sickle cell disease (SCD) is the most common inherited hemoglobinopathy characterized by chronic hemolytic anemia, vaso-occlusive crises (VOCs), sensitivity to bacterial infections and multi-organ failure. Painful VOCs may severely impair the life of children with SCD and their families, resulting in limited health-related quality of life (HRQoL). Currently, there is limited information how HRQoL changes over time following hospitalization for VOC. Therefore, the aim of this study is to evaluate the longitudinal impact of hospital admission for VOCs on the HRQOL in children with SCD. Methods: In this retrospective cohort study, children between the age of 8 and 18 years with SCD treated at the Amsterdam University Medical Centers were included. As part of standard care, once a year, these children completed patient reported outcomes measures (PROMs) on the KLIK PROM portal (www.hetklikt.nu). HRQoL was measured with the Pediatric Quality of Life Inventory (PedsQL). The score is ranging from 0-100, and a higher score indicates better QoL. Data were analysed from the medical files of patients, who filled out at least two PedsQL questionnaires between 2012 and 2021. The effect of the occurrence and frequency of hospital admissions for VOCs on the HRQoL was evaluated 3, 6, 9 and 12 months following hospital admission, using a linear mixed model adjusted for age and SCD genotype. Results: In total, 94 children were included with a median age of 11.8 years (interquartile range: 9.3 - 14.1), including 57 patients (61%) with the severe genotype: HbSS or HbSβ0 thalassemia. During follow-up, 37 patients (41%) had been admitted to the hospital for a VOC. Hospitalization for VOC in the last 12 months led to a decrease of 3.2 points (p=0.053) in HRQoL as compared to patients without hospitalization. Recurrent admissions for VOC in the previous 12 months further decreased HRQoL with 2.3 points for every additional admission (p=0.035). The significantly affected domains were physical functioning at 6, 9 and 12 months, and school performance 12 months after hospitalization. Conclusion: Hospitalization for VOC in children with SCD is associated with a decreased HRQoL persisting up to 12 months after admission. These findings highlight the importance of using patient-reported outcomes in children with SCD to screen for the need for extra support after hospitalization for VOCs to optimize HRQoL.

Quality of life in children up to 13 years following acute haematogenous osteomyelitis.

Acute haematogenous osteomyelitis (AHO) remains a cause of severe illness among children with the possibility of long-term consequences for growth and development. Previous research on sequelae from AHO rarely considers outcomes more than 2 years following treatment. This study aims to establish the quality of life of patients diagnosed with AHO in childhood up to 13 years after diagnosis, evaluating the impact on social, emotional, physical, and school function. Children treated for AHO between 2008 and 2018 at a tertiary referral centre in New Zealand were identified. Paediatric Quality of Life Inventory (PedsQL) questionnaires were conducted via phone with either the child or primary caregiver and responses analysed. Forty patients met inclusion criteria, were contactable by phone, and consented to participate. The mean age was 7 years (range 0-15) and most were female (60%). Health-related quality of life (HRQOL) was scored as a percentage with most participants scoring >80% ( n = 27). Those who do experience reduced quality of life following treatment for AHO were likely to complain of pain, stiffness, or anxiety. The impact of significant childhood illness on mental health was not adequately captured by the PedsQL but was highlighted in qualitative feedback. The majority of children treated for AHO reported excellent HRQOL up to 13 years following treatment although a negative impact on mental health was reported using qualitative analysis. A refined scoring system is needed to assess the long-term impact of musculoskeletal infection. Patient case series, Level IV.

Quality of life of children with Phenylketonuria at primary health care center in Cairo Egypt: an exploratory cross-sectional study

ABSTRACT Phenylketonuria (PKU) represents a common inborn error of metabolism. PKU management is complicated and bothersome; multiple challenges may represent strains on the Quality Of Life (QOL) of both children and their parents. We aimed to assess QOL among PKU children and to identify diversified factors affecting their parents’ QOL. An exploratory cross-sectional study was conducted among a calculated random sample of 120 PKU children attending a primary health care center in Cairo. A structured interview questionnaire included the QOL assessment tool ‘PedsQL questionnaire’ while the impact of the dietary plan on the family’s daily life was inquired upon utilizing the ‘PKU-QOL questionnaire’. Our results revealed a positive history of similar cases (PKU) in the family reported by 35 cases (29.1%). QOL was very high in children under 5 years and tended to decrease afterward. Children aged five years or more had low scores in all QOL domains. Dietary management of PKU represented a financial burden on nearly two-thirds of families. Parents of PKU children face difficulties in the management of dietary protein restriction; this includes (feeling sad about dietary restriction, worrying that the child might secretly eat forbidden food, and calculating the allowed protein in their children’s diet) and they also suffer from the daily expenses of PKU diet.

Features of eating behavior and quality of life of teenage girls depending on the level of physical activity

The problem of eating disorders among young people is becoming more common. Exactly at a young age that basic habits are formed, a food culture is laid. At this age, there is a period of increased attention to one»s own appearance, a desire to meet the «standards» accepted in modern society. However, for a significant part of modern youth, nutrition and the level of physical activity do not meet hygienic standards. In turn, a balanced diet and an adequate level of motor activity are predictors of optimal functioning of the body, determining the quality of human life. In this regard, it is relevant to study the relationship of the characteristics of eating behavior with the parameters of quality of life, depending on the level of physical activity. 60 adolescent girls aged 14–17 years were examined, who were divided into 2 groups depending on the level of physical activity. The diet and nutrition regime (questionnaire data), features of eating behavior (DEBQ), the emotional state of respondents (Zung Scale) and quality of life parameters (PedsQL questionnaire) were analyzed. It was found that the majority of respondents have irrational nutrition, but more significant eating disorders were found in girls who do not play sports. Athletes are characterized by higher indicators of physical and emotional functioning and quality of life in general. Girls who do not play sports demonstrate high indicators of social and role functioning, while they have a high intensity of depressive symptoms. There is a relationship between the integral indicator of quality of life and the emotionogenic type of eating behavior. For female athletes, this connection is mediated by external factors, and for female students — by internal experiences. The revealed interrelations between the peculiarities of eating behavior and the quality of life of young people determine the need for additional attention to the issues of hygienic regulation of the diet, increasing physical activity, which will increase adherence to the principles of a healthy lifestyle.

A comparison of parent-reported and self-reported psychosocial function scores of the PedsQL for children with non-severe burn

BackgroundQuality of life of paediatric patients after burn injury is often assessed through parents who may score differently to their child. Non-severe burns are the most common type of burn injury in Western Australia, however, despite low severity and high survival rates, they can cause long term physical and psychosocial problems which need to be detected early in order to provide patients with optimal holistic care. MethodsDemographic and clinical data were collected from paediatric patients (5–16-year-old) with non-severe burns (<20% total body surface area), and Paediatric quality of life (PedsQL) questionnaires were collected from both the patient and their parent. Two cohorts of patients were assessed: first, those at approximately six months after burn, and second, those more than one-year after burn. Differences between parent-scores and self-scores were analysed using multivariate linear regression to assess the relationship between risk factors and observed differences in PedsQL scores. ResultsParents reported poorer Psychosocial Function (PSF) for younger children (p = 0.01) and for patients from higher socioeconomic status areas (p = 0.05) compared to their children. In the ‘Early Recovery Cohort’, female patients had significantly different scores to their parents (p < 0.01). In the ‘Late Recovery Cohort’, parents rated older patients lower than they rated themselves (p = 0.03). ConclusionAge at burn, socioeconomic status, and female gender may increase the discrepancy in quality-of-life assessments between parents and patients.

PB2227: HEALTH-RELATED QUALITY OF LIFE OVER TIME IN PEDIATRIC PATIENTS WITH SICKLE CELL DISEASE ADMITTED FOR VASO-OCCLUSIVE CRISIS.

Background: Sickle cell disease (SCD) is the most common inherited hemoglobinopathy characterized by chronic hemolytic anemia, vaso-occlusive crises (VOCs), multi-organ damage and an impaired health-related quality of life (HRQoL). Previous studies have shown that the occurrence of VOCs affects the HRQoL substantially in children with SCD. However, there is limited evidence about the HRQoL changes over time following hospitalization for VOC. Aims: The aim of this study is to evaluate the longitudinal impact of hospital admission for VOCs on the HRQOL in pediatric patients with SCD. Methods: In this retrospective cohort study, children between the age of 8 and 18 years with SCD treated at the Amsterdam University Medical Centers were included. As part of standard care, these children complete once a year Patient Reported Outcomes measures (PROMs) on the KLIK PROM portal (www.hetklikt.nu). HRQoL was measured with the Pediatric Quality of Life Inventory (PedsQL) (score ranging from 0-100, a higher score indicates better QoL). Data were collected from the medical files of patients, who filled out at least two PedsQL questionnaires between 2012 and 2021. The effect of the occurrence and frequency of hospital admissions for VOCs on the HRQoL was evaluated using a linear mixed model 3, 6, 9 and 12 months after hospital admission, adjusted for age and SCD genotype. Results: In total, 109 children were included with a median age of 11.8 years (IQR: 9.2 – 14.2), including 72 patients (66%) with the severe genotype: HbSS or HbSβ0. During follow-up, 45 patients (41%) were admitted to the hospital for a VOC. If hospitalization occurred 6 and 12 months prior to the PedsQoL measurement, a decrease of 3.61 (p=0.049) and 3.80 points (p=0.007) in HRQoL respectively, was seen compared to patients without hospitalization. As for the frequency of VOC admission in the preceding 12 months, a decrease of 2.28 points in HRQoL was observed for every additional admission (p=0.012). Summary/Conclusion: The negative longitudinal association between hospital admission for VOC and HRQoL in pediatric patients with SCD gets worse and persists up to 12 months. These findings highlight the importance of monitoring using PROMS in clinical practice and extra attention and support for the negative consequences of the hospital admission for VOCs, affecting the HRQoL.

Surgical treatment of aneurysmal bones cysts

Introduction. Bone cysts are one of the most common tumor-like bone diseases of childhood, most often occurring in the 1st and 2nd decade of life. According to the world medical literature, there is still no consensus on the best methods of treating bone cysts.Aim – to evaluate the effectiveness of surgical treatment of aneurysmal bone cysts (ABC) in children with the use of allografts of biological (animal and human) origin.Materials and methods. This study included 56 pediatric patients with ABC treated at The National Medical Research Center for Children’s Health, Russia, Moscow. 37 patients with aneurysmal bone cysts (29 active ABC, 8 inactive ABC) underwent surgical treatment. Our follow-up period ranged from 12 months to 80 months. In the postoperative period, the examination was carried out at a period of 3, 6, 12, 18, 24 months and then once a year, while assessing: the presence/absence of the recurrence (radiologically), the timing of functional recovery of the operated segment, the timing of X-ray reconstruction of the graft, the assessment of physical and emotional components of the patients’ quality of life were evaluated using the PedsQL questionnaire at admission and within 12 months from the date of surgery.Results and discussion. In 37 cases of surgical treatment of ABC with the use of allografts of biological origin, the recurrence presented in 7 patients (19%) – these patients, who had an active ABC, required repeated surgical interventions. The average time of complete bone repair in the lesion site ranged from 9 months to 22 months (14 months on average). Functional recovery of the operated segments was on average 10 months for the upper extremities and 12 months for the lower extremities.Conclusion. The use of allografts of biological origin is effective in the case of inactive aneurysmal bone cysts. In case of active ABC the effectiveness of bone grafting with allografts of biological origin is reduced.

Quality of life in children with latent tuberculosis infection

The number of children newly infected with Mycobacterium tuberculosis continues to increase. Children from foci of tuberculosis infection are most often susceptible to primary infection. In recent years, the number of children diagnosed with latent tuberculosis infection has tended to increase. It is also important that the detection of active tuberculosis also continues to grow among such children.Objective. To establish the role of risk factors and identify deviations in the quality of life in children with latent tuberculosis infection living in the foci of tuberculosis infection.Characteristics of children and research methods. The researchers examined 110 children aged 0-14 years. They analyzed the risk factors for infection with Mycobacterium tuberculosis. The effectiveness of BCG vaccination was assessed by the presence and size of the scar. The quality of life was determined using the PedsQL questionnaire version 4.0 for children of 0-14 years old.Results and discussion. There were much more children whose mothers suffered from tuberculosis in the family. There were much more children whose mothers released bacteria as compared to the children whose mothers did not excrete mycobacterium tuberculosis. The patients with an infiltrative form of pulmonary tuberculosis were the predominant source of infection in children. The children with diagnosed active tuberculosis with a history of latent tuberculosis infection were in close contact with a family member who had previously been in the penitentiary zone, and also had unsatisfactory living conditions.Conclusion. The presence of an active form of tuberculosis in a child creates the preconditions for a comprehensive deterioration of all parameters of the life quality, while latent tuberculosis infection has an adverse effect only on certain aspects of the life quality. Psychosocial functioning is most commonly affected.

Parental Disease Specific Knowledge and Its Impact on Health-Related Quality of Life.

Objective: Structured education programs have been shown to improve somatic outcome and health-related quality of life (HRQOL) in a variety of chronic childhood diseases. Similar data are scarce in paediatric liver transplantation (pLTx). The purpose of this study was to examine the relationship of parental disease-specific knowledge and psychosocial disease outcome in patients after pLTx. Methods: Parents of 113 children (chronic liver disease n = 25, after pLTx n = 88) completed the transplant module of the HRQOL questionnaire PedsQL, the “Ulm quality of life inventory for parents of children with chronic diseases” ULQUI, and a tailor-made questionnaire to test disease-specific knowledge. Results: Parental knowledge was highest on the topic of “liver transplantation” and lowest in “basic background knowledge” (76% and 56% correct answers respectively). Knowledge performance was only marginally associated with HRQOL scores, with better knowledge being related to worse HRQOL outcomes. In contrast, self-estimation of knowledge performance showed significant positive correlations with both PedsQL and ULQUI results. Conclusion: Patient HRQOL and parental emotional wellbeing after pLTx are associated with positive self-estimation of parental disease-specific knowledge. Objective disease-specific knowledge has little impact on HRQOL. Parental education programs need to overcome language barriers and address self-efficacy in order to improve HRQOL after pLTx.