Pediatric Quality Of Life Inventory Research Articles

The Economic Consequences of Sirolimus Treatment in Patients With Vascular Malformations

Objectives: Sirolimus is one of the first oral drugs for safe and effective treatment of patients with vascular malformations, and may save (expensive) interventions. Therefore the objective was to investigate the cost-effectiveness of sirolimus in vascular malformations. Methods: This cost-effectiveness analysis from a medical and societal perspective was performed alongside a clinical phase IIB effectiveness of sirolimus in patients with vascular malformations trial. Utility and quality-adjusted life years (QALY) were calculated using the short-form six-dimension in adults and pediatric quality of life inventory scores to express effectiveness in children. Total costs included medical and productivity costs. The net monetary benefit was calculated, given a range of willingness to pay (WTP) values within societies with nationalized health care. Results: After 6 months on sirolimus, the pediatric quality of life inventory increased by a mean of 12.10 points (95% confidence interval [CI], 7.64–16.37) in children, and the QALY increased by 0.07 (95% CI, 0.03–0.11) in adults. After 6 months on sirolimus, total costs per child were numerically increased by €110.88 (95% CI, −€1786.17–€2165.95). Per adult, sirolimus resulted in a numerical decrease of mean total cost of €426.84 (95% CI, −€2831.38–€1414.60). In adults, there was a 95% chance that sirolimus treatment would be cost-effective with a WTP of €50k per QALY gained. Conclusion: This first pharmacoeconomic analysis shows a substantial improvement in utility and health-related quality of life due to sirolimus treatment in patients with vascular malformations. It shows a high chance that sirolimus will be cost-effective in adults within the limits of acceptable WTP values within societies with nationalized health care. In children, sirolimus may become cost-effective in the future due to a possible decrease in interventions.

Changes in health-related quality of life during transition to adult healthcare: an international prospective cohort study

ObjectiveTo study changes in health-related quality of life (HRQoL) in adolescents and young adults (AYAs) with chronic medical conditions across the transfer to adult healthcare and associations of HRQoL with...

Health-related quality of life at age 10 years in children born extremely preterm.

To evaluate the association between prenatal maternal health and socioeconomic status (SES) and health-related quality of life (QoL) among 10-year-old children born extremely preterm. Retrospective analysis of the Extremely Low Gestational Age Newborns (ELGAN) Study cohort of infants born < 28 weeks gestational age. QoL was assessed at 10 years of age using the Pediatric Quality of Life Inventory. Multivariate regression models were used for analyses. Of 1198 participants who survived until 10 years of age, 889 (72.2%) were evaluated. Lower maternal age, lack of college education; receipt of public insurance and Supplemental Nutrition Assistance Program (SNAP) were associated with lower QoL scores. Specific maternal health factors were also associated with lower child QoL scores. Specific, potentially modifiable, maternal health and social factors are associated with lower scores on a measure of parent-reported child QoL across multiple domains for children born extremely preterm.

Physician and informal care use explained by the Pediatric Quality of Life Inventory (PedsQL) in children with suspected genetic disorders.

To examine associations between Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and PedsQL Infant Scales with formal health care resource utilization (HCRU) and informal caregiver burden. We studied a pediatric cohort of 837 patients (median age: 8.4 years) with suspected genetic disorders enrolled January 2019 through July 2021 in the NYCKidSeq program for diagnostic sequencing. Using linked ~ nine-month longitudinal survey and physician claims data collected through May 2022, we modeled the association between baseline PedsQL scores and post-baseline HCRU (median follow-up: 21.1 months) and informal care. We also assessed the longitudinal change in PedsQL scores with physician services using linear mixed-effects models. Lower PedsQL total and physical health scores were independently associated with increases in 18-month physician services, encounters, and weekly informal care. Comparing low vs. median total scores, increases were 10.6 services (95% CI: 1.0-24.6), 3.3 encounters (95% CI: 0.5-6.8), and $668 (95% CI: $350-965), respectively. For the psychosocial domain, higher scores were associated with decreased informal care. Based on adjusted linear mixed-effects modeling, every additional ten physician services was associated with diminished improvement in longitudinal PedsQL total score trajectories by 1.1 point (95% confidence interval: 0.6-1.6) on average. Similar trends were observed in the physical and psychosocial domains. PedsQL scores were independently associated with higher utilization of physician services and informal care. Moreover, longitudinal trajectories of PedsQL scores became less favorable with increased physician services. Adding PedsQL survey instruments to conventional measures for improved risk stratification should be evaluated in further research.

Investigation of the Relationship between Physical Activity Level and Quality of Life in Children with Specific Learning Disabilities using Regression Analysis

It has been reported that the academic skills of children with specific learning disabilities (SLDs) and their participation in physical activity may be affected. This study aimed to examine the relationship between physical activity level and quality of life in children with SLDs. The study was conducted with children diagnosed with SLDs at the Afyonkarahisar Special Education and Rehabilitation Center. Once the sociodemographic information of the participants was recorded, their physical activity levels were determined using the Physical Activity Questionnaire for Older Children (PAQ-C, ages 8-14 years), and their quality of life levels were assessed using the Pediatric Quality of Life Inventory (PedsQL). A total of 51 individuals, 21 girls and 30 boys, were included in the study. The mean age of the participants was 10.58±1.51 years. Physical activity score had a weak positive correlation with the physical health summary score (rspearman=0.342, p=0.014); weak positive correlations with the emotional functionality score (rspearman=0.308, p=0.028) and the school functionality score (rspearman=0.337, p=0.016); and moderate positive correlations with the school functionality score (rspearman=0.427, p=0.002), the psychosocial health summary score (rspearman=0.440, p=0.001), and the total PedsQL score (rspearman=0.462, p=0.042). In addition, the physical activity score was determined to statistically significantly predict the total PedsQL score (F=13.297; p=0.001). In conclusion, this study revealed that the physical activity levels of children with SLDs significantly affected their quality of life.

Impact of Coronavirus disease 2019 pandemic in children with functional abdominal pain disorders: Data from long-term follow-up.

We aimed to compare symptom frequency and severity in children with functional abdominal pain disorders (FAPDs) and to evaluate anxiety, quality of life (QoL) and global health during Coronavirus disease 2019 (COVID-19) related quarantine and after 17 months. Children diagnosed with FAPDs between October 2019 and February 2020 at 5 different centers were enrolled and prospectively interviewed during the COVID-19 quarantine and 17 months later when schools, hospital services, and routine activities had re-opened to the public. The patients were asked to complete the Rome IV questionnaire, the Pediatric Quality of Life Inventory 4.0 (PedsQL 4.0) Generic Core Scale, the Patient-Reported Outcomes Measurement Information System (PROMIS) anxiety and global health questionnaires. Data about COVID-19 infection and its clinical outcome were also collected. Ninety-nine out of 180 (55%) children completed the follow-up. The number of patients reporting a worsening of their symptoms was significantly higher at follow-up when compared to the quarantine period (24/99 [24.2%] vs. 12/99 [12.1%]; p = 0.04). The PedsQL 4.0 subtotal score at follow-up significantly decreased at 17 months of follow-up (65.57 [0-100]) when compared to the quarantine (71 [0-100], p = 0.03). Emotional functioning was the most significantly reduced (Follow-up: 64.7 [0-100] vs. Quarantine: 75 [0-100]; p = 0.006). We did not identify significant differences in symptoms and QoL between COVID-19 infected children and the remaining cohort at the two time points. An improvement of symptoms and QoL was observed during the quarantine, followed by a worsening at-follow-up. These findings reinforce the hypothesis that the nest effect overweighted COVID-19 fears during the quarantine and highlight the importance of psychological factors in symptom exacerbation.

Health-related quality of life among paediatric patients with coarctation of the aorta: an observational study

ABSTRACT Advancements in early diagnosis and paediatric cardiac surgery have improved the long-term survival of patients with congenital heart disease, necessitating a thorough assessment of their health-related quality of life (HRQoL). This study aimed to assess HRQoL in paediatric patients with coarctation of the aorta (CoA) (both as reported by patients and caregivers), and to evaluate associated factors. Patients aged 5–18 years diagnosed with CoA and their parents were enrolled at Bambino Gesù Children’s Hospital between September 2016 and December 2017. Socio-demographic characteristics were recorded using a family form, and the Pediatric Quality of Life Inventory (PedsQL) 3.0 cardiac module was used to evaluate HRQoL. Clinical data were retrieved from medical chart reviews. In this observational study, sixty-five pediatric patients (39 males, median [IQR] age 12 [9–14]) with CoA and their parents (65 mothers and 65 fathers) were enrolled. These patients exhibited overall good HRQoL. Mothers reported significantly lower total HRQoL scores compared to patient self-reports (p = .037), as well as treatment anxiety (p = .033), and cognitive problems (p = .021). Pediatric patients with CoA perceived their HRQoL better than their mothers did. Female sex and older age were associated with lower HRQoL scores.

A Pilot Study of a Family Management Program for Parents of Children with Acute Lymphoblastic Leukemia

ObjectivesThe aim of this completed pilot study was to evaluate the feasibility of implementing a family management program (FMP) for parents of children with acute lymphoblastic leukemia (ALL). Data SourcesA convenience sample of 11 parents of preschool-aged children with ALL were recruited from an ambulatory chemotherapy-care clinic at a tertiary hospital in Thailand. Participants received three FMP sessions over 3 weeks. The FMP is based on two established family programs (ie, FMP-style framework and building on family strengths) and reviewed literature. The following measures were used to evaluate parents’ responses at baseline, postintervention, and follow-up: Family Management Measure, Beach-Center Family Quality-of-Life Scale, and Pediatric Quality of Life Inventory. Data were analyzed using one-way repeated-measures analysis of variance. ConclusionThe study results provide promising evidence that the FMP is feasible and improves family management and quality of life for parents of enrolled children with ALL. Implications for Nursing PracticeEducating pediatric oncology nurses and other healthcare professionals to replicate the FMP may help to provide better family management, and child quality of life support to future parents and other family members of young children diagnosed with ALL. This support should focus on educating parents about the potential effects of caring for a child with ALL on the family and fostering positive relationships within the family and offering guidance on effective family communications and decision-making processes.

Health-related quality of life in children and adolescents with Marfan syndrome or related disorders: a controlled cross-sectional study

BackgroundThis cross-sectional controlled study aims to assess health-related quality of life (HRQoL) of children and adolescents with a molecular diagnosis of Marfan syndrome (MFS) or related disorders and to evaluate the factors associated with HRQoL in this population. Sixty-three children with MFS and 124 age- and sex-matched healthy children were recruited. HRQoL was assessed using the Pediatric Quality of Life Inventory (PedsQL™) generic questionnaire. The correlation between HRQoL scores and the different continuous parameters (age, body mass index, disease severity, systemic score, aortic sinus diameter, and aerobic physical capacity) was evaluated using Pearson’s or Spearman’s coefficient. A multiple linear regression analysis was performed on the two health summary self-reported PedsQL™ scores (physical and psychosocial) to identify the factors associated with HRQoL in the MFS group.ResultsExcept for emotional functioning, all other domains of HRQoL (psychosocial and physical health, social and school functions) were significantly lower in children with MFS compared to matched healthy children. In the MFS group, the physical health summary score was significantly lower in female than in male patients (self-report: absolute difference [95%CI] = -8.7 [-17.0; -0.47], P = 0.04; proxy-report: absolute difference [95%CI] = -8.6 [-17.3; 0.02], P = 0.05) and also negatively correlated with the systemic score (self-report: R = -0.24, P = 0.06; proxy-report: R = -0.29, P = 0.03) and with the height Z-score (proxy-report: R = -0.29, P = 0.03). There was no significant difference in the physical health summary scores between the different genetic subgroups. In the subgroup of 27 patients who performed a cardiopulmonary exercise test, self- and proxy-reported physical health summary scores were highly correlated with their aerobic physical capacity assessed by peak oxygen consumption (VO2max) and ventilatory anaerobic threshold (VAT). In the multivariate analysis, the most important independent predictors of decreased physical health were increased height, decreased body mass index, decreased VAT and use of prophylactic therapy.ConclusionsThis study reports an impaired HRQoL in children and adolescents with MFS or related conditions, in comparison with matched healthy children. Educational and rehabilitation programs must be developed and evaluated to improve exercise capacity and HRQoL in these patients.Trial registrationClinicalTrials.gov, NCT03236571. Registered 28 July 2017.

The Effects of Medical Clowning on the Quality of Life (QoL)on the Patients in on Co-Pediatric Daycare Wards

This study investigate the effects of Medical Clowning on the quality of life (QoL)on the patients in onco-pediatric daycare wards. A total of 35 participants aged 8-15 years were recruited from an onco-pediatric ward. Validated tools, including the Pediatric Quality of Life Inventory (PedsQL) and thematic coding, were utilized to assess QOL respectively. Statistical analysis, including frequency distribution for quantitatively analyzing the scores of quality of life and further using thematic coding to form respective codes done conducting semi structured interviews on the patients and their guardians were employed to analyze the data. The findings revealed significant improvements in the pediatric quality of life following medical clowning therapy. The frequency distribution for scoring quantitative data for quality of life, thematic coding for qualitatively analysis and forming 8 different themes, to assess the effectiveness of medical clowning therapy was used. The findings indicated a significant positive impact of medical clowning on improving pediatric quality of life. These results highlight the therapeutic benefits of medical clowning interventions in pediatric oncology care, emphasizing their role in enhancing patient well-being and promoting a supportive treatment environment. Furthermore, the findings underscore the importance of interdisciplinary collaboration and policy support in integrating medical clowning into comprehensive pediatric oncology care protocols. Overall, this study contributes valuable insights into the effectiveness of medical clowning as a psychosocial intervention in pediatric oncology settings, providing evidence to support its integration into standard care protocols. Moving forward, further research is needed to explore the long-term effects of medical clowning interventions and optimize their implementation in clinical practice.

The psychosocial outcomes of advanced hybrid closed-loop system in children and adolescents with type 1 diabetes.

The study was carried out to determine the psychosocial outcomes of advanced hybrid closed-loop (AHCL) systems in children and adolescents with type 1 diabetes (T1D).Single-center and cohort study with a duration 6 months consisted of 60 children and adolescents with T1D. Standard clinical procedures, including both glycemic indicators, e.g., sensor-measured time within the 70-180 mg/dL range and glycated hemoglobin (HbA1c) levels, and psychosocial metrics were used for data collection. The psychosocial metrics included the Pediatric Quality of Life Inventory (PedsQL) 3.0 Diabetes Module for both children (8-12 years) and parents; the Quality of Life for Youth scale for adolescents (13-18 years); the Strengths and Difficulties Questionnaire (SDQ); the Hypoglycemia Fear Survey for Children (HFS-C); the Revised Child Anxiety and Depression Scale (R-CADS); and AHCLS-specific DTSEQ satisfaction and expectation survey. These metrics were evaluated at the baseline and after 6 months of AHCL use.Of the 60 children and adolescents with T1D for whom the AHCL system was utilized, 41 of them, 23 female and 18 male, completed the surveys. The mean age of the 41 children and adolescents was 12.5 ± 3.2 (min. 6.7, max. 18) years. The time spent within the target glycemic range, i.e., time-in-range (TIR), improved from 76.9 ± 9% at the baseline to 80.4 ± 5% after 6 months of AHCL system use (p = 0.03). Additionally, HbA1c levels reduced from 7.1% ± 0.7% at the baseline to 6.8% ± 0.8% after 6 months of AHCL system use (p = 0.03). The most notable decline in HbA1c was observed in participants with higher baseline HbA1c levels. All patients' HFS-C and AHCL system-specific DTSEQ satisfaction and expectation survey scores were within the normal range at the baseline and remained unchanged during the follow-up period. No significant difference was found in the R-CADS scores of children and adolescents between baseline and after 6 months of AHCL system use. However, there was a significant decrease in the R-CADS scores of the parents. Patients' PedsQL scores were high both at the baseline and after 6 months. The SDQ scores were high at baseline, and there was no significant improvement at the end of 6 months. Conclusion: This is the first study to investigate in detail the psychosocial outcomes of AHCL system use in T1D patients and their parents. Although state-of-the-art technologies such as AHCL provide patients with more flexibility in their daily lives and information about glucose fluctuations, the AHCL resulted in a TIR above the recommended target range without a change in QOL, HFS-C, SDQ, and R-CADS scores. The scores obtained from the R-CADS conducted by the parents of the children indicated that the use of pumps caused a psychological improvement in the long term, with a significant decrease in the R-CADS scores of the children and adolescents with T1D. What is Known: • Previous studies focused on clinical outcomes of AHCL systems in pediatric T1D patients, showing glycemic control improvements. • Limited attention given to psychosocial outcomes of AHCL systems in children and adolescents with T1D. • Crucial psychosocial factors like quality of life, emotional well-being, and fear of hypoglycemia underexplored in AHCL system context. What is New: • First study to comprehensively examine psychosocial outcomes of AHCL systems in pediatric T1D patients. • Study's robust methodology sets new standard for diabetes technology research and its impact on qualiy of life.

Analyzing the Quality of Life in Individuals with Fragile X Syndrome in Relation to Sleep and Mental Health.

The purpose of this paper was to examine the physical, emotional, social and school functioning domains of quality of life of individuals with Fragile X Syndrome, in relation to mental health and sleep patterns to gain a better understanding of how these aspects are affected by the disorder. This study included 119 individuals with Fragile X Syndrome who were given different cognitive examinations by a neuropsychologist or by parent-proxy questionnaires. This study focused on the Pediatric Quality of Life Inventory (PedsQoL), the Anxiety, Depression and Mood Scale (ADAMS), the Children's Sleep Habits Questionnaire (CSHQ), but did include other cognitive tests (Vineland Adaptive Behaviour Scales, Nonverbal IQ, Autism Diagnostic Observation Schedule). We identified significant associations between decreases in emotional, social and school domains of PedsQoL and the ADAMS subtests of Generalized Anxiety, Manic/Hyperactivity and Obsessive/Compulsivity, with the subtest of Depressed Mood having associations with lower physical and emotional domains. We also identified a significant impact between CSHQ subtests of Sleep Anxiety, Night Wakings, Daytime Sleepiness, and Parasomnia with the emotional and school domains of PedsQoL. There were associations connecting school functioning with Bedtime Resistance, and additional associations connecting emotional functioning with Sleep Duration and Sleep Onset Delay. Physical functioning was also associated with Sleep Anxiety. Our study shows how mental health and sleep defects impact improper sleep patterns and mental health which leads to decreases in the quality of life for individuals with FXS, and how it is important to screen for these symptoms in order to alleviate issues.

Examination of quality of life and psychiatric symptoms in childhood Graves' disease.

The aim of our study is to examine the emotional, behavioral problems, and psychiatric symptoms of children diagnosed with Graves' disease (GD), to assess their quality of life, and to compare with control group. The research was planned as a cross-sectional study and included 16 patients with GD (13 female and three male) and 29 healthy children for control group (19 female and 10 male). Sociodemographic form, Pediatric Quality of Life Inventory, Revised Child Anxiety and Depression Scale-Child Version (RCADS-CV), Strengths and Difficulties Questionnaire (SDQ), Turgay DSM-IV-Based Child and Adolescent Behavior Disorders Screening and Rating Scale (T-DSM-IV-S), and Affective Reactivity Index scale were applied to the children and their families. Eighty one percent of GD group (GG) (n=13, mean age 15.1±2.2) and 66 % of control group (CG) (n=19, 14.6±2.2) were girls. No significant difference was found between GG and CG in terms of quality of life, anxiety, and depression scores. GG had higher scores in affective reactivity index, SDQ-P total score, and T-DSM-IV-S total scores (p values 0.039; 0.009; 0.023, respectively). While no significant difference was detected in the T-DSM-IV-S-inattention and hyperactivity scores, significantly higher scores were detected in oppositional defiance and conduct disorder scores (pvalues 0.172; 0.294; 0.019; 0.027, respectively). In children with GD, irritability, oppositional defiant, and conduct disorder symptoms have been detected. Children with these mental health symptoms experience behavioral and emotional difficulties in their daily lives. It is important to follow up children with GD for possible comorbid psychiatric disorders.

Comparison of adolescent and parental perception of health-related quality of life of adolescents with idiopathic scoliosis

Purpose: Evaluation of the health-related quality of life (HRQoL) of individuals with idiopathic scoliosis (IS) is important because of the physical and psychosocial problems caused by IS. In general, children interact closely with their parents and are thus influenced by their parents’ opinions. It is thus useful to examine adolescent and parental perceptions of the adolescent’s HRQoL for the rehabilitation of individuals with IS.&#x0D; Methods: This study compared the adolescents’ and their parents’ perceptions of the adolescent’s HRQoL including 65 individuals with IS (10–18 years). It was used the pediatric quality of life inventory (PedsQL) to assess the adolescents’ HRQoL and to examine the domains of physical health, emotional functioning, social functioning, school functioning, and psychosocial health.&#x0D; Results: The results showed that the scores of the adolescents were higher than their parents’ in social functioning. Scores of social functioning and HRQoL were higher in girls than in their parents.&#x0D; Conclusion: This discrepancy between the adolescents and their parents may have a negative effect on their rehabilitation, healthy social integration, and adaptation of individuals with IS. Shedding light on the reasons for this discrepancy would be beneficial for raising the awareness of parents with children with IS about this issue.

Answering tendencies on questionnaires: Comparing Mandarin and Bahasa Malaysia versus English

Aims Conducting psychological research in different countries and cultures necessitates measures in different languages. However, the language of a measure might influence responses, even within the same multilingual individual. The cultural accommodation theory proposes that one’s association with a language influences their responses. Moreover, response styles (RSs), such as an extreme or acquiescence RS, might systematically affect responses regardless of the content of the measure. These effects were reported on culture-related measures but are unclear on culture-free measures. Methodology and analyses We aimed to investigate the effects of language on psychological measures that do not explicitly examine cultural factors. Multilingual Malaysians ( n = 111) filled in the Adult Executive Functioning Inventory (ADEXI), the Depression, Anxiety, and Stress Scale—21 items (DASS-21), the Brief Coping Orientation to Problems Experienced Inventory (Brief COPE), the Pediatric Quality of Life Inventory (PedsQL), and the Traditional Masculinity-Femininity Scale (TMF) in Bahasa Malaysia and English, or in Mandarin and English Findings. There were no language differences on the ADEXI and TMF. However, several subscales of the Brief COPE, the Stress subscale of the DASS, and the PedsQL scores were higher in Mandarin than in English. On the Brief COPE and the PedsQL, there were also differences in RS between Mandarin and English, which might explain (part of) these differences. There were no differences between Bahasa Malaysia and English in scores. However, there was a more extreme RS in English than in Bahasa Malaysia and a more acquiescence RS in Bahasa Malaysia than in English on the Brief COPE. These differences suggest that the measures are not culture-free or that previously reported language differences did not result from culture alone. The language of a measure might be an additional important factor. When using different translations of the same measure, it is important to take cultural accommodation and RS into account.

Disease severity impacts perceived quality of life in congenital diaphragmatic hernia: a prospective observational study

BackgroundWhile research indicates comparable quality of life (QOL) in congenital diaphragmatic hernia (CDH) and healthy populations, the effect of CDH severity on patients’ health perceptions remains unexplored. We aimed to...

Translation, Transcultural Adaptation, and Validation of the Brazilian Portuguese Version of the Body Image Disturbance Questionnaire for Scoliosis (BR-BIDQ-S).

Objective The Body Image Disturbance Questionnaire for Scoliosis (BIDQ-S) for scoliosis derives from the Body Image Disturbance Questionnaire (BIDQ) with specific adaptation for scoliosis patients. Despite its significance and applicability, this instrument has never been translated into Brazilian Portuguese. The current study aimed to translate, transculturally adapt, and validate the BIDQ-S into Brazilian Portuguese. Methods BIDQ-S was translated and culturally adapted into Brazilian Portuguese using the American Association of Orthopedic Surgeons (AAOS) criteria. The questionnaire validation relied on internal consistency and comparison with the Cobb angle, Pediatric Quality of Life Inventory (PedsQL), and Scoliosis Research Society (SRS-22). The Brazilian version (BR-)BIDQ-S validation occurred in a sample of 35 adolescents with scoliosis waiting for specialized treatment. Results Internal consistency of the BR-BIDQ-S was 0.899 according to the Cronbach's index (i.e., virtually perfect). Although BR-BIDQ-S did not correlate with the Cobb angle, it presented correlations with the Physical, Emotional, and Social domains from the PedsQL and the Function/Activity domain from the SRS-22. Conclusion BR-BIDQ-S was reliable in evaluating the body image of adolescents with scoliosis, presenting an internal consistency of 0,899 (virtually perfect). Moreover, similar to the original instrument, it correlated with PedsQL and SRS-22.

Quality of life and thalassemia in India: A scoping review

ABSTRACT In recent years, a multitude of studies have been conducted to investigate the assessment of quality of life (QoL) among individuals affected by thalassemia. This scoping review aimed to examine the existing knowledge regarding the QoL and its associated factors among individuals with thalassemia in India. Databases, such as PubMed, SCOPUS, Web of Science, and the Preferred Reporting Items for Systematic Review and Meta-Analysis Extension for Scoping Reviews (PRISMA-ScR) guidelines, were searched. A total of nine articles were included in the review. The included studies mainly investigated children. The Pediatric Quality of Life Inventory (PedsQL) is the most common instrument used most often. Overall, the research findings indicate that individuals who underwent blood transfusion exhibited a lower QoL than those who did not receive blood transfusion. Additionally, it was observed that children diagnosed with thalassemia reported a lower QoL than adults. Nevertheless, the studies exhibited notable methodological deficiencies that constrained the validity and generalizability of the results. Hence, it is imperative to undertake comprehensive QoL research encompassing all regions of India and various thalassemia populations within the country to bridge this evidentiary void.

Music and movement therapy improves quality of life and attention and associated electroencephalogram changes in patients with attention-deficit/hyperactivity disorder

BackgroundAttention-deficit/hyperactivity disorder (ADHD) is the most common neurobehavioral disorder. Treatments for ADHD include pharmacological and nonpharmacological therapy. However, pharmacological treatments have side effects such as poor appetite, sleep disturbance, and headache. Moreover, nonpharmacological treatments are not effective in ameliorating core symptoms and are time-consuming. Hence, developing an alternative and effective treatment without (or with fewer) side effects is crucial. Music therapy has long been used to treat numerous neurological diseases. Although listening to music is beneficial for mood and cognitive functions in patients with ADHD, research on the effects of music and movement therapy in children with ADHD is lacking. MethodsThe present study investigated the effects of an 8-week music and movement intervention in 13 children with ADHD. The Pediatric Quality of Life Inventory (PedsQL) was used to evaluate changes in participants' quality of life. Conners’ Kiddie Continuous Performance Test (K-CPT 2) and the Swanson, Nolan, and Pelham rating scale (SNAP-IV) were used to assess core symptoms. Electroencephalogram (EEG) recordings were analyzed to determine neurophysiological changes. ResultsThe results revealed that the participants' quality of life increased significantly after the 8-week intervention. Furthermore, the participants' hit reaction times in the block 1 and block 2 tests of K-CPT 2 decreased significantly after the intervention. EEG analysis demonstrated an increase in alpha power and Higuchi's fractal dimension and a decrease in delta power in certain EEG channels. ConclusionOur music and movement intervention is a potential alternative and effective tool for ADHD treatment and it can significantly improve patients’ quality of life and attention.

Acceptability and tolerability of long-acting injectable cabotegravir or rilpivirine in the first cohort of virologically suppressed adolescents living with HIV (IMPAACT 2017/MOCHA): a secondary analysis of a phase 1/2, multicentre, open-label, non-comparative dose-finding study

Long-acting injectable cabotegravir and rilpivirine have demonstrated safety, acceptability, and efficacy in adults living with HIV-1. The IMPAACT 2017 study (MOCHA study) was the first to use these injectable formulations in adolescents (aged 12-17 years) living with HIV-1. Herein, we report acceptability and tolerability outcomes in cohort 1 of the study. In this a secondary analysis of a phase 1/2, multicentre, open-label, non-comparative dose-finding study, with continuation of pre-study oral combination antiretroviral treatment (ART), 55 adolescents living with HIV-1 were enrolled to receive sequential doses of either long-acting cabotegravir or rilpivirine and 52 received at least two injections. Participants had a body weight greater than 35 kg and BMI less than 31·5 kg/m2 and had been on stable ART for at least 90 consecutive days with an HIV-1 viral load of less than 50 copies per mL at a participating IMPAACT study site. Participants had to be willing to continue their pre-study ART during cohort 1. The primary objectives of the study were to confirm doses for oral and injectable cabotegravir and for injectable rilpivirine in adolescents living with HIV. This analysis of participant-reported outcomes included a face scale assessment of pain at each injection and a Pediatric Quality of Life Inventory (PedsQL) at baseline and week 16 for participants in the USA, South Africa, Botswana, and Thailand. A subset of 11 adolescents and 11 parents or caregivers in the USA underwent in-depth interviews after receipt of one or two injections. This trial is registered at ClinicalTrials.gov, NCT03497676. Between March 19, 2019, and Nov 25, 2021, 55 participants were enrolled into cohort 1. Using the six-point face scale, 43 (83%) of participants at week 4 and 38 (73%) at week 8 reported that the injection caused "no hurt" or "hurts little bit", while only a single (2%) participant for each week rated the pain as one of the two highest pain levels. Quality of life was not diminished by the addition of one injectable antiretroviral. In-depth interviews revealed that parents and caregivers in the USA frequently had more hesitancy than adolescents about use of long-acting formulations, but parental acceptance was higher after their children received injections. High acceptability and tolerability of long-acting cabotegravir or rilpivirine injections suggests that these are likely to be favoured treatment options for some adolescents living with HIV. National Institutes of Health and ViiV Healthcare.