PedsQL Questionnaire Research Articles

Diabetes self-management smartphone application: Could it be an alternative for continuous glucose monitoring in low resource settings?

The "Rightest" app connected to Rightest glucose meter via Bluetooth, helps to set blood glucose target and customize measurements. The app is provided with ketone alert when BG is ≥ 240 mg/dl. To assess the role of the rightest app in improving glycaemic control as well as quality of life in a 6- month interval of its usage. A clinical trial included 40 participants with type 1 diabetes, mean age 14.3 ± 1.42 years and diabetes duration of 4.5 ± 3.6 years regularly following up at Diabetes Unit. Rightest app was installed on the participants' smart phone on enrollment and 6 months later assessment of the glycemic control was done by HbA1c and time in range. Results collected from app Quality of life (PedsQL) and user experience (UEQ) Questionnaires were applied at the end of the study. Using smartphone app yielded a significant reduction in mean BG level (-17.64 %, p = 0.012) that decreased HbA1c ( -10.63 %, p = 0.000). Increase of SMBG frequency was observed (p = 0.04). This is reflected on a 20 % increment time in range generated by app. (p-value = 0.002) and lower time above range (TAR > 180 mg/dl, -18.75 %, P = 0.001) in intervention group compared to control. However, the number of hypoglycemic events (p = 0.71) or DKA(p = 0.59) did not differ between groups. PedsQL questionnaire total score has improved (p-value = 0.010) in favor of intervention group with good experience with app indicated by UEQ. The pragmatic total score (1.425) of UEQ was above average while the hedonic total score was good (1.250) and overall score was good (1.338). The higher score of UEQ was inversely correlated with mean BG (r = -0.414, P = 0.008) and positively correlated to glycemic control (r = 0.644, p = 0.002). Using mobile apps as an alternative for CGM in low resource settings can help improve glycemic control and quality of life for those who don't have access to diabetes technology services because of unavailability or unaffordability.

Changes in the quality of life and mental health in adolescents with irritable bowel syndrome

Aim. To study the quality of life and mental health in adolescents with irritable bowel syndrome. Material and methods. 12–19 years adolescents were examined. They were divided into two groups: 12 patients with and 170 cases without irritable bowel syndrome (IBS). Grading was carried out in accordance with the Rome IV criteria for functional gastrointestinal disorders. The quality of life of the subjects was studied using the PedsQL questionnaire, and mental health — with the questionnaire «strengths and difficulties» (SDQ). The reliability of differences in quantitative features was analyzed using the Mann-Whitney criterion, qualitative features — with the χ2 criterion. Values ​​p < 0.05 were considered statistically significant. Results. In accordance with the Rome IV criteria IBS was diagnosed in 6.6%. In IBS adolescents, the quality of life according to the emotional functioning scale was significantly reduced (p = 0.017). According to the R. Goodman questionnaire, individuals with functional bowel disorders also more often had problems communicating with peers (p = 0.010) and emotional symptoms (p = 0.003) compared to children without IBS, which characterize mental health disorders. At the same time, deviant mental health disorders were noted in every fourth IBS child, and every third of them had borderline mental disorders, which is higher in total than in individuals without IBS (p = 0.005). To a greater extent, mental health deviations affected the emotional sphere. Conclusion. In IBS adolescents, mental health disorders with a predominance of emotional disorders in its structure were more often recorded, and a decrease in the quality of life according to the emotional scale was noted.

Enhancing schoolchildren’s health and quality of life perception by achieving bioelectrical activity: an interventional quanti-qualitative study with REAC technology

This study aimed to evaluate how schoolchildren aged 6-7 years old perceive their quality of life, specifically focusing on physical pain, fear, anxiety, and stress, after receiving therapeutic intervention with Radioelectric Asymmetric Conveyer (REAC) technology. The study used a descriptive, mixed-methods approach, combining both quantitative and qualitative analyses. Nine children from a public school in the Western Brazilian Amazon participated in the intervention, which involved the use of Neuro-Postural and Psychophysical Optimization (NPO and NPPO) protocols with REAC technology. Data were collected through the Pediatric Quality of Life Inventory (PedsQL) questionnaire and semi-structured interviews conducted with the children and their caregivers. Functional dysmetria and various quality of life dimensions were assessed using the Wilcoxon and Mann-Whitney tests. Thematic analysis of the qualitative data was conducted using IRAMUTEQ software to analyze pre- and post-therapy narratives. The results showed that functional dysmetria in the children was reduced to undetectable levels, and improvements were observed in their social quality of life scores (p=0.0346). Additionally, the children’s narratives revealed improvements in physical, emotional, and social well-being. In conclusion, a single cycle of NPO and NPPO protocols with REAC technology significantly improved the children's quality of life by reducing their self-perceived physical pain, fear, anxiety, and stress.

Качество жизни у детей со спинальной мышечной атрофией: обзор литературы

INTRODUCTION. Quality of life is a comprehensive characteristic of the standard of living, consisting of objective and subjective living conditions of the population. Specialized questionnaires are used to assess the quality of life in adults and children. In particular, the general PedsQL questionnaire and its specialized modules are used to assess the quality of life of children with various diseases. AIM. To evaluate the use of questionnaires in patients with various diseases, such as cardiovascular pathology, gastrointestinal diseases, neuromuscular diseases, etc. One of the severe neuromuscular diseases is spinal muscular atrophy, characterized by progressive symptoms of flaccid paralysis and muscle atrophy due to degeneration of α-motor neurons of the anterior horns of the spinal cord. This disease most often manifests itself in childhood or infancy and significantly worsens the quality of life of young patients. In the world, PedsQL 3.0 Neuromuscular Module is used to assess the quality of life of children with spinal muscular atrophy, to determine the level of their physical, psychosocial and material well-being. This questionnaire has proven itself to be the most convenient not only for parents, but also for children. CONCLUSION. Different questionnaires are used for different groups of diseases, but all questionnaires have a common denominator in the form of an assessment of physical and psychosocial well-being indicators.

Long-term sequelae and quality of life after childhood-onset craniopharyngioma: Results of a Spanish multicenter study.

We aim to describe the characteristics of patients with childhood-onset craniopharyngioma and to analyze factors that impair quality of life (QoL) in this population. Multicenter national study including patients treated between 2008 and 2022, from 2 to 25years of age diagnosed with craniopharyngioma. QoL was assessed once during patient's follow-up by age-adapted versions of Pediatric Quality of Life Inventory (PedsQL) questionnaire. Sixty-six patients were included. Median age at diagnosis was 5years (interquartile range [IQR]: 3-8), while median follow-up was 7.4years (IQR: 2.8-9.7). Most craniopharyngioma were suprasellar (93.9%), and 59.7% had hypothalamic involvement (HI). All patients underwent surgery, 44.4% received radiotherapy, and 23.6% intracystic therapy. Most frequent long-term complications were visual deficit (72.7%) and endocrine impairment (94.5%). Patients exhibited hypothyroidism requiring hormone replacement (92.4%), hypocortisolism (80.3%), diabetes insipidus (86.4%), and/or growth hormone therapy (50%). When parents evaluated QoL, PedsQL median score was 53.8 points out of 100 (IQR: 41-71.6). Higher scores were noted when patients assessed their own QoL (median score 64.8 [IQR: 57.3-81.8]), observing statistically significant differences (p=.019). QoL was impaired by repeated surgeries (r=-.44; p=.014), HI (median score 51.5 [IQR: 39-63.8] vs. 76.4 [59-84.8]; p=.001), radiotherapy (median score 51.9 [IQR: 38.1-61.3] vs. 63.8 [IQR: 49-82.5]; p=.02) and longer follow-up (r=-.3; p=.01). In our study, most patients had significant comorbidities and low overall QoL scores, which was mainly affected by repeated surgery, radiation, and hypothalamic involvement. This reflects the need for further research and intensified studies of systemic therapy/alternate strategies to broaden the standard-of-care options, so that treatment-related sequalae can be avoided.

CORRELATION BETWEEN PEDIATRIC SYMPTOM CHECKLIST-17 (PSC-17) AND PEDIATRIC QUALITY OF LIFE INVENTORY (PedsQL) IN ELEMENTARY SCHOOL CHILDREN

Background : Identification of psychosocial problems and quality of life of school-aged children should be routinely applied in child developmental health-related practices. The main concerns in measuring the quality of life of children with psychosocial disorders are mainly related to language development, cognitive development and the type of disorder. This has led to the identification of developmental disorders in school-aged children requiring specific tools (PSC-17 score and PedsQL score) designed for pediatric patients. The similarities or differences obtained based on these measurement tools will depend on the precise formulation of the questions as well as the assessment of the situation of the individual being evaluated. Methods : An analytic observational study using a cross-sectional design involve three elementary schools in the Jimbaran area, Badung, Bali. The study was conducted at Udayana University Hospital in July 2022. The scores used in this study were self-reported PedsQL scores and PSC-17 scores obtained based on interviews with children. The correlation between the evaluation results using the PSC-17 and PedsQL questionnaires was evaluated using the Spearman correlation test. Results : Amongst 189 children, median age was 11 years (range 11–13 years). There was a significant correlation between PSC-17 scores and PedsQL scores (r= -0.59; p<0.001). Subgroup analysis on PSC-17 aspect subscales and PedsQL dimensions found significantly varying negative correlations. Conclusion : This study found a moderate negative correlation between PSC-17 scores and PedsQL scores, varying correlations strength between each aspect/dimension of each score. Keywords: children, quality of life, PedsQL, psychosocial, PSC-17.

B - 12 Differences in Quality of Life in Students with Functional Neurological Disorders by School Setting

Abstract Objective Attending school in person for students with Functional Neurological Disorder (FND) has been recommended for improved functioning and reduced symptoms. There is little to no research measuring the impact of school setting on quality of life. This study investigates whether school setting impacts parent-perceived quality of life (QoL) in children with FND. Method The study included 142 patients (ages 7–19 years old) diagnosed with FND that were seen in an outpatient clinic at Children’s Medical Center, Dallas. Patients were classified as either participating in homeschool, regular in-person schooling, or in-person schooling with an Individualized Education Plan (IEP) or Section 504 accommodations. This did not include children being homeschooled solely due to COVID-19 school closures. A parent or guardian completed the PedsQL questionnaire. A single factor ANVOA was utilized to identify significant differences between groups. Post hoc comparisons using the Tukey HSD test were then conducted. Results Results revealed overall significant differences between groups (p0.1). Conclusions Results of this study support the recommendation of attending school in person, with or without formal support. Participation in typical daily routines may improve overall impact of pediatric FND.

Comparative analysis of health-related quality of life between children with bladder and bowel dysfunction versus lower urinary tract dysfunction and healthy controls.

This study aimed to compare health-related quality of life (HRQoL) between children with bladder and bowel dysfunction (BBD) and lower urinary tract dysfunction (LUTD) alone and healthy controls based on self-report forms and parent-proxy report forms. In this retrospective study, clinical records were reviewed. Children with LUTD, with or without bowel dysfunction, and healthy children were included in this study. The dysfunctional voiding scoring system and Rome IV Diagnostic Criteria were used to assess lower urinary tract symptoms. The Rome IV Diagnostic Criteria was also used to evaluate bowel symptoms. The Pediatric Quality of Life Inventory 4.0 (PedsQL) questionnaire was administered to investigate pediatric HRQoL. Of the total 252 children (mean age, 7.3±2.1 years) who participated in this study, 78 were classified into the BBD group and 174 into the LUTD group. Compared with the control group, the BBD group had significantly lower total PedsQL scores (p<0.001) and psychosocial healthy summary scores (p<0.001). The BBD group had significantly lower emotional functioning scores than the LUTD group (p=0.023). Children with BBD who presented with fecal incontinence (FI) had a significantly lower social functioning score than those without FI (p=0.023). Children with BBD who present with FI are at higher risk of decreased psychosocial HRQoL, and they require special emotional support. These findings underscore the need for effective treatment and follow-up to improve the HRQoL of children with BBD who presented with FI.

Features of the quality of life of first graders taking into account gender differences and cognitive abilities

The purpose of the study: To study the features of the quality of life of first-graders, taking into account gender differences and cognitive abilities. Design: An open prospective non-randomized comparative clinical trial. Materials and methods: 631 children were examined, students of the first grades of secondary schools without a specialized bias № 110, 83, 75, 67, 9 Rostov-on-Don using the international questionnaire PedsQL 4.0 – Pediatric Quality of Life Inventory. To assess the cognitive development of children, the D. Wexler scale was used with the determination of the intellectual coefficient. Results: First-graders with a high level of cognitive development have reduced indicators of physical and emotional functioning, as well as the overall quality of life score. Girls with a high intellectual coefficient, in comparison with boys, have lower physical, emotional, school functioning and higher indicators of social functioning. The indicators of quality of life in children with a high level of cognitive development do not reflect the same in children who do "excellent". Conclusion: The revealed features of the quality of life of first-graders with different levels of cognitive development require differentiated medical, psychological and pedagogical support of children in this age period and further study of their health.

The complex link between sleep-disordered breathing and asthma control in pediatric patients: A cross-sectional study

BackgroundIn children, asthma and sleep-disordered breathing (SDB) may affect quality of life (QoL), and SDB may complicate asthma management. ObjectiveTo evaluate the prevalence of SDB, its association with asthma control, and risk factors associated with SDB in a cohort of asthmatic children. The effects of asthma control and SDB on QoL were also investigated. MethodsWe consecutively recruited asthmatic children referred to our Pulmonology Service from December 1, 2022 to May 31, 2023. Data on anthropometrics, respiratory function, and allergies were collected. The prevalence of SDB was assessed by the Pediatric Sleep Questionnaire (PSQ). Asthma control status was assessed by the Childhood Asthma Control Test (C-ACT), while QoL was evaluated by the Pediatric Quality of Life Inventory (PedsQL) questionnaire. Factors associated with SDB were analyzed. ResultsA total of 78 asthmatic children aged 5–12 years were included. SDB was found in 37.2% of them, with a higher prevalence in children with uncontrolled versus well-controlled asthma (60.1% vs. 27.3%; p-value = 0.005). The C-ACT score was significantly lower in SDB-positive versus SDB-negative group, and uncontrolled asthma (C-ACT ≤19) was associated with a 4.15-fold increased risk of SDB. The PedsQL score was significantly lower in asthmatic children with than without SDB and was associated with lower SDB risk. SDB increased the risk of uncontrolled asthma in children, and asthmatic children with SDB had lower QoL. ConclusionIn asthmatic children, SDB affects both asthma control and QoL. Children with uncontrolled asthma should be referred for polysomnography to identify a possible underlying SDB.

Vivre avec le syndrome d’entérocolite induite par les protéines alimentaires (SEIPA) : impact sur la qualité de vie des patients et de leurs familles

The food protein-induced enterocolitis syndrome (FPIES) is a non-IgE-mediated food allergy, often underdiagnosed despite an increasing prevalence. This study aims to assess the impact of FPIES on the quality of life and identify risk factors for psychosocial distress. We collected data from a cohort of 48 pediatric patients with FPIES, recruited by private and hospital allergists through telephone interviews with families. Quality of life, assessed through QUALIN and Peds QL questionnaires, is generally preserved, but psychopathological aspects and sociability are affected. Parental concerns are significant, with 61% experiencing anxiety during the food diversification period. Regarding emotional well-being, 85% of parents express concerns, while FPIES induces stress in 75% of them. Family activity limitations affect 62% of families. FPIES impacts the social life of children (54%) and has a significant financial impact on 57% of families. Negative influences on quality of life include a history of hospitalization, the number of emergency room visits for FPIES, cow's milk as a triggering food, and FPIES to multiple foods. These results emphasize the importance of considering psychosocial dimensions in the overall management of FPIES.

Efficacy and safety of N-acetyl-L-leucine in patients with ataxia telangiectasia: A randomized, double-blind, placebo-controlled, crossover clinical trial

BackgroundAtaxia telangiectasia (AT) is an autosomal recessive multisystem disorder. Most patients have progressive cerebellar ataxia, oculocutaneous telangiectasia, frequent pulmonary infection, and an increased risk of malignancies. Although N-acetyl-dl-leucine (ADLL) has shown some efficacy in patients with AT, its more pharmacologically active enantiomer, N-acetyl-l-leucine (NALL), has just recently been investigated in ataxic individuals. The current study assessed the efficacy of NALL in patients with AT. MethodsThis 2 × 2 crossover, double-blind, randomized clinical trial was conducted on 20 patients with AT. After excluding four patients, 16 subjects (eight females, eight males; mean age 9.8 ± 3.5 years) with a definitive genetic diagnosis of AT were randomly assigned to one of two study groups, with one group receiving 1–4 g/day NALL or a placebo for six weeks. Subjects then had a 4-week washout before crossing over to the other treatment for an additional six weeks. The Spinocerebellar Ataxia Functional Index (SCAFI) and the Scale for Assessment and Rating of Ataxia (SARA) score assessed patients' motor function. Quality of life (QOL) was evaluated by a specialist using the PedsQL questionnaire. Fasting blood samples were taken from all subjects before and after each intervention to determine potential side effects. ResultsAlthough patients' nausea and constipation were improved, the results failed to reveal any significant benefits of NALL treatment on ataxia symptoms. NALL treatment had no significant effects on SARA, SCAFI-9HPT (9-hole peg test) nondominant, SCAFI-9HPT dominant, or SCAFI-8WMT (8 m walking time) (p > 0.05). Our patient's Physical Health score in Child self-report and Parent proxy-report did not significantly change in the treatment group compared to the placebo (p > 0.05). Furthermore, there were no significant changes in energy and macronutrient intake after NALL treatment. None of the volunteers reported serious or moderate side effects. ConclusionsTo the best of our knowledge, this was the first placebo-controlled, randomized clinical trial exploring NALL's potential effects for treating AT. Despite improvements in some symptomss, NALL intervention failed to improve motor function significantly. However, patients' nausea and constipation were improved by NALL, which can be a relevant benefit clinically.

Clinical and radiological aspects of the forearm in children with congenital radioulnar synostosis: a cohort study

Introduction The upper limb functional limitations in congenital radioulnar synostosis may significantly affect the daily activities of patients. Classifications of the condition are descriptive and have limited practical application.Purpose Determine a functionally significant quantitative criterion for anatomical changes in the forearm.Material and methods 92 children (136 forearms) with congenital radioulnar synostosis were examined for limitations in activities of daily living (ADL), health-related quality of life measured with PedsQL questionnaire; pronation of the forearm and radiographic parameters. A comparative and correlation analysis, ROC analysis were performed to determine the relationship between the forearm pronation and limitations of ADL.Results Statistically significant correlations were revealed between symptoms and the forearm alignment (p &lt; 0.01, rxy = 0.5); subluxation of the ulnar head and forearm alignment (p &lt; 0.001, rxy = 0.6); bowing deformity of the radius, forearm alignment and subluxation of the ulnar head and between the length of the forearm bones and bowing deformity of the radius (p &lt; 0.05, rxy = 0.4 and rxy = 0.5). A statistically significant inverse correlation was revealed between symptoms and PedsQL scores (p = 0.038, rxy = –0.4). Pronation of 45° was the threshold value of the forearm alignment with a high risk of ADL limitation. The area under the ROC curve corresponding to the relationship between symptoms and the forearm alignment was 0.955 ± 0.021 (95 % CI: 0.915–0.995). There was a statistically significant (p &lt; 0.01) decrease in the lumen of the medullary canal in the middle third of the ulnar shaft with the radius lumen being unchanged. Dorsal subluxation of the ulnar head was detected In 30 % of cases.Discussion The characteristics identified demonstrated changes in the forearm bones with functional impairments being correlated with the forearm pronation.Conclusion The correlation between the patient’s symptoms and the forearm alignment must be taken into account in the classification and when determining indications for surgical treatment distinguishing between functional (&lt; 45° pronation) and dysfunctional (≥ 45° pronation) options.

Sequelae and post-thrombotic syndrome after venous thromboembolism in acute lymphoblastic leukemia survivors treated on the NOPHO ALL2008 protocol.

The treatment of acute lymphoblastic leukemia (ALL) is frequently complicated by toxicity, including venous thromboembolism (VTE) affecting roughly 8% of patients. VTE can lead to post-thrombotic syndrome (PTS), a group of signs and symptoms developed as a complication to deep venous thrombosis (DVT), imposing risk of permanent disability and reduced quality of life (QoL). PTS prevalence ranges from 0% to 70%, reflecting very heterogenous cohorts and assessment tools. We aimed to estimate sequelae, including PTS and QoL in children and adults (<45years old) who had a DVT during ALL treatment. PTS and QoL scores were obtained through use of Villalta and Modified Villalta Scale, PedsQL, and Short Form-36 questionnaires. The cohort comprised 20 children (<18years) and seven adults (median age: 12.9years, range: 2-44years) at the time of DVT diagnosis. In total, 25 ALL survivors underwent PTS examination. The examination took place when survivors were 7-48years (median age: 20.3years, median follow-up time 6.8years). QoL was assessed correlating cases with three matching ALL survivors without VTE. Two adults (15.4%) showed mild or moderate PTS. Eight children (66.7%) were diagnosed with mild PTS, while three cases had collaterals as sole symptoms. Pain or symptoms affecting daily life were reported by 16%. No difference in QoL was found (p=.9). This study underscores the need for comprehensive population-based investigations with validation of PTS instruments in ALL survivors.

Health-related quality of life for pediatric patients with end-stage kidney disease: A systematic review and meta-analysis of the Pediatric Quality of Life Inventory (PedsQL).

Health-related quality of life (HRQoL) studies demonstrate the impact of end-stage renal disease (ESRD) on the physical and psychosocial development of children. While several instruments are used to measure HRQoL, few have standardized domains specific to pediatric ESRD. This review examines current evidence on self and proxy-reported HRQoL among pediatric patients with ESRD, based on the Pediatric Quality of Life Inventory (PedsQL) questionnaires. Following PRISMA guidelines, we conducted a systematic review and meta-analysis on HRQoL using the PedsQL 4.0 Generic Core Scale (GCS) and the PedsQL 3.0 ESRD Module among 5- to 18-year-old patients. We queried PubMed, Embase, Web of Science, CINAHL, and Cochrane databases. Retrospective, case-controlled, and cross-sectional studies using PedsQL were included. Of 435 identified studies, 14 met inclusion criteria administered in several countries. Meta-analysis demonstrated a significantly higher total HRQoL for healthy patients over those with ESRD (SMD:1.44 [95% CI: 0.78-2.09]) across all dimensional scores. In addition, kidney transplant patients reported a significantly higher HRQoL than those on dialysis (PedsQL GCS, SMD: 0.33 [95% CI: 0.14-0.53]) and (PedsQL ESRD, SMD: 0.65 [95% CI: 0.39-0.90]) concordant with parent-proxy reports. Patients with ESRD reported lower HRQoL in physical and psychosocial domains compared with healthy controls, while transplant and peritoneal dialysis patients reported better HRQoL than those on hemodialysis. This analysis demonstrates the need to identify dimensions of impaired functioning and produce congruent clinical interventions. Further research on the impact of individual comorbidities in HRQoL is necessary for developing comprehensive, integrated, and holistic treatment programs.

Shared medical appointments and quality of life for children with HIV-AIDS

Background The human immunodeficiency virus (HIV) infects immune cells and weakens the immune system. There are 36.9 million HIV sufferers worldwide, with 1.8 million of them being children. Children with HIV and their parents may benefit from focus group discussions, also known as shared medical appointments (SMAs). SMAs represent an educational method capable of enhancing the quality of healthcare services. However, this method remains relatively under-researched in HIV/AIDS patients.&#x0D; Objective To assess the impact of SMA on the quality of life of children with HIV-AIDS.&#x0D; Methods This quasi-experimental study with a cross-sectional approach was carried out for 2 months. Subjects participated in SMAs, accompanied by a pediatrician as facilitator. Subjects filled three Pediatric Quality of Life (PedsQL) questionnaires (Inventory 4.0, General Well-Being Scale 3.0, and Healthcare Satisfaction 3.0), before and after attending SMAs. We compared the results.&#x0D; Results There were 12 respondents, with the majority aged 5-10 years (50%), and a higher proportion of male than female (33.3%). The majority of boys had stage 3 HIV, while most girls had stage 2 HIV. According to the PedsQL Inventory module, the average quality of life for the physical aspect was the highest (83), while the lowest was observed in the school aspect (45). In the General Well-being module, the average emotional health scores were 84 before and 93 after SMAs, which were higher than the overall health scores (68 and 77 before and after SMAs, respectively). In the Healthcare Satisfaction module, the lowest average scores were in family satisfaction (52 before and 64 after SMAs), whereas the highest were in satisfaction with healthcare provider treatment (87 and 81 before and after SMAs, respectively). There was a significant increase before and after the SMAs in emotional health (P=0.009).&#x0D; Conclusion An improvement in emotional health was observed based on the General Well-being module of the PedsQL before and after SMAs intervention. Thus, SMAs may potentially improve the quality of life for children with HIV-AIDS.

Transcultural adaptation and validation of a Korea version of Pedi-IKDC questionnaire

BackgroundThis study aimed to translate and transculturally adapt the English version of the Pedi-IKDC questionnaire into Korean and evaluate the psychometric properties of the Korean Pedi-IKDC questionnaire in terms of internal consistency, feasibility (floor and ceiling effect), construct validity, test-retest reliability, and factor analysis.MethodsThe original English version of the Pedi-IKDC questionnaire was translated and transculturally adapted into Korean according to established guidelines. A total of 239 patients aged 7–18 years who visited the hospital because of knee pain or discomfort were considered eligible for the study. These patients completed the Korean version of the Pedi-IKDC and Pediatric Quality of Life questionnaires (PedsQL). The correlation between the PedsQL and Pedi-IKDC questionnaires was assessed to confirm the validity of the questionnaire. To verify the validity of the Korean Pedi-IKDC questionnaire, internal consistency, feasibility, test-retest reliability, and construct validity were evaluated, and a factor analysis was performed.ResultsInternal consistency was found to be satisfactory in all subscales (Cronbach’s alpha ≥ 0.7). The test-retest reliability was satisfactorily high for all subscales (Intraclass correlation coefficient: 0.81–0.84). A high correlation was observed between the total Pedi-IKDC score and the score on the physical-health subscale of child version of the PedsQL (Correlation coefficients: 0.720). There were no floor effects in all subscales, but ceiling effects were observed in four questions. Additionally, factor analysis suggested that the questionnaire could be divided into two subscales.ConclusionThe Korean version of the Pedi-IKDC questionnaire was successfully translated and transculturally adapted according to the established guidelines. The Korean Pedi-IKDC questionnaire has been proven reliable and valid.

КАЧЕСТВО ЖИЗНИ ДЕТЕЙ С НАСЛЕДСТВЕННЫМИ НАРУШЕНИЯМИ РАЗВИТИЯ СОЕДИНИТЕЛЬНОЙ ТКАНИ И ИХ РОДИТЕЛЕЙ В ПРОЦЕССЕ ДИНАМИЧЕСКОГО КОНТРОЛЯ В УСЛОВИЯХ ПОЛИКЛИНИКИ

Purpose of the study. To assess the quality of life of children with hereditary disorders of connective tissue development and their parents during dynamic monitoring in a polyclinic. Material and methods. In the period from 2020 to 2023, the patients were under dispensary observation. The main group of patients (n=30) and the comparison group (n=30) are presented. At the beginning of treatment, the average age was 4.7±0.5 years. For patients of the two groups, therapeutic measures were proposed, which included back massage (ten sessions once in 4 months), electrical stimulation of the back muscles (ten sessions once in 6 months), and a physical therapy complex. Additionally, patients from the main group were prescribed sessions at the school "Posture Correction", swimming, bracing, additional physiotherapy complexes (electrical stimulation of the back – 3 courses of 10 sessions per year), back massage (10 sessions every month), diet and vitamin therapy for 3 years. The quality of life was assessed using the PedsQL questionnaire. Results. It was statistically significantly proved that during the period of dispensary observation, the patients of the main group and their parents improved physical parameters in 65.0% of cases (in the comparison group in 20.3% of cases), p=0.016; emotional parameters improved in 59.8% of cases (in the comparison group in 21.0% of cases), p=0.014. At the same time, a satisfactory muscular corset was visualized, which was confirmed by additional examination methods (electroneuromyography, stabilometry); complications from the osteoarticular system were reduced. In patients from the comparison group and their parents, the quality of life did not change statistically significantly. The patients noted hypotonia of the back muscles in 53% of cases and pain on palpation along the spine in the thoracic region in 37.3% of cases (p&lt;0.001). Conclusions. Over time, in the main group, the number of complications from the osteoarticular system was minimized and the quality of life in patients of the main group and their parents significantly improved.

Quality of life of pediatric patients with craniopharyngioma: A retrospective series from a low-middle-income country with more than 4 years follow-up.

Craniopharyngiomas (CPs) are rare, low-grade tumors characterized by a range of debilitating symptoms. Most of the existing literature reports postoperative outcomes of the different treatment modalities of childhood CP. However, few studies have reported the impact of these different treatment methods on the quality of life (QoL) of survivors of childhood CP. Therefore, we aim to assess the correlation between different surgical modalities on the QoL of patients with childhood CP from a lower-middle-income country. Twenty-nine survivors who underwent treatment for CP were included in the study. The selected patients had either been managed with complete resection, debulking, or placement of an Ommaya reservoir. QoL was assessed by the pediatric quality of life (PedsQL) questionnaire. The effect of the different treatment modalities on the QoL was assessed. Mean follow-up was 4.4 ± 2.19 years. The type of surgery was significantly related to the mean PedsQL scores for the total score as well as each of the individual domain scores (P < 0.001). Complete resection of the tumor resulted in the lowest mean (standard deviation) PedsQL total score of 56.6 ± 7.12 compared to the Ommaya reservoir with biopsy (83.3 ± 5.69) and debulking (93.8 ± 3.37) (P < 0.001). There was a significant effect of the type of surgical treatment on the QoL of the survivors of childhood CP. It is important to consider the long-term outcomes in addition to immediate postoperative outcomes when deciding on a treatment strategy while managing children with CP.

The activity levels and quality of life of physically disabled children who continued or did not continue rehabilitation during the COVID-19 pandemic.

Social isolation during the COVID-19 pandemic had a harmful impact on the psychological and physical health of children and teenagers. It is known that interruptions in rehabilitation can cause soft tissue contractures, bone deformities and a decline in motor functions among other complications. The aim of this study was to compare the quality of life and physical activity levels of physically disabled children who continued and did not continue rehabilitation during the COVID-19 pandemic. The gross motor levels of 18 children who continued special education and rehabilitation during the COVID-19 pandemic and 18 children who did not continue were determined with the Gross Motor Function Classification System (GMFCS). The International Physical Activity Questionnaire Short Form (IPAQ) and Children's Quality of Life Scale (PedsQL) questionnaires were administered. The study participants comprised 54.1% females and 45.9% males with a mean age of 9.02 years. No significant differences were detected between the two groups in respect of demographic, clinical and functional characteristics (p > 0.05). The walking parameters of PedsQL (p = 0.02) and IPAQ-SF scores (p = 0.03) were determined to be statistically significantly better in the group that continued rehabilitation. The results of this study demonstrated that the quality of life and walking capacity of children who continued rehabilitation during the COVID-19 pandemic were better. Methods should be developed to ensure that rehabilitation is not interrupted during isolation periods of any future pandemic.