Proxy Reports Research Articles

Sleep Problems and Quality of Life in Children with Epilepsy Without Neurodevelopmental Disorders.

Background/Objectives: Sleep problems affect the quality of life (QoL) and treatment prognosis of children with epilepsy (CWE). We analyzed sleep problems and QoL in CWE but without neurodevelopmental disorders, which affect sleep and QoL. We also examined discrepancies between child self-reports and parent proxy reports in QoL assessments. Methods: Thirty-two CWE in grades 2-6 (aged 7-12 years) in regular classes who attended Osaka Metropolitan University Hospital and PL General Hospital between January 2022 and August 2023 were compared with 21 children who had attended the hospitals for acute non-neurological disorders and had recovered (control group). Children with neurodevelopmental disorders, those unable to answer questionnaires, and those taking sleeping pills were excluded. Children in both groups completed the Kinder Lebensqualität Fragebogen (KINDL-R); their parents completed the KINDL-R and Japanese Sleep Questionnaire for Elementary Schoolers (JSQ-ES). Results: There were no significant differences in mean (±SD) JSQ-ES total scores between the epilepsy and control groups (71.6 ± 21.4 vs. 63.2 ± 15.2, respectively; p = 0.16). In the epilepsy group, there were no significant differences in total or subscale KINDL-R scores between children with (JSQ-ES ≥ 80) and without (JSQ-ES < 80) sleep problems. Correlation coefficients between child self-reports and parent proxy reports for KINDL-R total scores were 0.171 (p = 0.348) and 0.656 (p = 0.001) for the epilepsy and control groups, respectively. There was a significant difference between the total scores of children's self-reports and parents' proxy reports in the control (p = 0.008) group, but not in the epilepsy group (p = 0.837). Conclusions: Sleep problems may not have significant impacts on the QoL of CWE without neurodevelopmental disorders. Parents of CWE do not always correctly assess their children's QoL, so it is important to ask both children and their parents to obtain a comprehensive picture of their QoL.

The Lived Experience of People With Intellectual Disability in Community Settings: A Comparison of Self‐Reports and Staff Reports

ABSTRACTBackgroundThere is a need for more qualitative research focusing on the lived experiences of people with an intellectual disability and a better understanding of how these experiences align with other voices in their lives, such as family and support staff.MethodsIn this qualitative study, we asked people with an intellectual disability (N = 87) and their support workers (N = 120) similar questions about factors contributing positively and negatively to the lives of those with an intellectual disability. We conducted a thematic analysis combining data across respondents, while also identifying areas of similarities and divergence between self‐reports and staff reports. The setting was community‐supported living schemes and group homes in the UK.FindingsQualitative themes, representing key positive and negative factors in the lives of people with an intellectual disability, were (1) Positive impact of social relationships on well‐being, (2) positive impact of participation and roles on self‐determination and well‐being and (3) negative impacts of difficulties affecting day‐to‐day life. These three themes are all linked to a broader sense of identity, purpose and self‐determination. These were broadly consistent across self‐reports and staff reports, although there were some points of divergence, particularly in Theme 3.ConclusionsThese findings reveal areas that are key to maximising the quality of life of people with an intellectual disability and suggest that self‐reports and proxy reports can sometimes offer unique perspectives. Our findings can be used to ensure that the priorities of people with an intellectual disability are considered in their care.

Health-Related Quality of Life Among Discharged Patients With Hemophagocytic Lymphohistiocytosis: A Follow-Up Study.

Evaluating the post-discharge health-related quality of life (HRQoL) in hemophagocytic lymphohistiocytosis (HLH) and exploring its influencing factors. The study was conducted at a regional pediatric medical center and involved pediatric patients diagnosed with HLH between July 2017 and July 2022. Healthy children of the same age and sex were included as the control group. The HRQoL and its associated factors in pediatric patients were assessed using the PedsQL 4.0 Parent Proxy Report and a general information survey. In the first year following diagnosis, psychological health and overall score in HLH patients were worse than those of the control group. However, scores for emotional functioning, school functioning, physical health, psychosocial health, and overall scores in the HLH group increased over the years since diagnosis. By the 5-year post diagnosis, there were no significant differences between the HLH group and the control group in social functioning, school functioning, physical health, psychosocial health, and overall scores (p>0.05). Generalized linear model analysis revealed that HLH patients who underwent transplantation have worse social functioning, physical health, overall score, while HLH patients with HLH recurrence have worse social functioning, psychosocial health, overall score (p<0.05). The HRQoL of HLH patients is compromised after discharge; however, it progressively returns to levels comparable to those of healthy cohorts over time since diagnosis. Transplantation, and HLH recurrence are identified as factors affecting the HRQoL in HLH patients.

Delirium risk profiles in a population-based study of United States older adults undergoing common noncardiac surgeries.

Older adults often require surgical care and are at elevated risk of delirium. We explored delirium risk profiles across the population of U.S. older adults who underwent one of 10 common noncardiac surgeries. We analyzed Health and Retirement Study (HRS) participants linked with Medicare billing data who underwent the following 10 noncardiac surgeries from 2000 to 2018 at age 65 or more: total knee arthroplasty (TKA), total hip arthroplasty (THA), spine surgery, cholecystectomy, colorectal surgery, hernia repair (ventral, umbilical, or incisional), endarterectomy, prostatectomy, transurethral resection of the prostate (TURP), and hysterectomy. Demographic and health covariates were obtained from the HRS dataset. Latent cognitive ability was calculated from cognitive testing, proxy reports, and demographics at the preoperative HRS interview. We compared standardized differences for delirium risk factors across the 10 surgeries and qualitatively clustered them into phenotypical subgroups. We analyzed 7424 older adults (mean age 76 ± 6 years, 45% male). Endarterectomy patients presented with the highest burden of nearly all health and cognitive factors, implying higher delirium risk (e.g., stroke, 22%; depressive symptoms, 30%; high school or less education, 73%; frailty, 42%; lowest latent cognitive ability). A second "general surgery" phenotype, including cholecystectomy, colorectal, and hernia surgery patients, experienced more frailty (29%-32%) and depressive symptoms (24%-26%), with moderate comorbidity burden. A third "pain" phenotype, which included TKA, THA, and spine surgery patients, commonly reported moderate or severe pain (47%-53%) and impairment in activities of daily living (ADL, 23%-30%), but fewer comorbid medical conditions. The remaining surgery types (hysterectomy, prostatectomy, TURP) were not phenotypically grouped and generally had lower risk features for delirium. In an epidemiological cohort of US older adults, we identified clinically meaningful heterogeneity in delirium risk profiles across different surgical types, which may have implications for delirium risk stratification and delirium prevention or treatment.

Health related quality of life and associated factors among children living in previous leprosarium and nonleprosarium areas of Eastern Ethiopia

Children and their families living in leprosarium areas may have a lower quality of life than the general population. However, there is limited evidence on health-related quality of life and its associated factors among children living in previous leprosarium settlement areas. Hence, this study aimed to compare the health-related quality of life among children living in previous leprosarium and non-leprosarium settlement areas in eastern Ethiopia. A community-based comparative cross-sectional study was conducted among 515 randomly selected children aged 8 to 18 years living in the Amir Nur and Babile districts from January to February 30, 2024. Data were collected through interviews with children and parents using the Pediatric Quality of Life Inventory Version 4. The data were analyzed using STATA version 14. Simple and multiple linear regression was employed to identify associations between independent and outcome variables. The overall mean health-related quality of life scores were 73.98 ± 18.47 and 77.67 ± 14.72 in the child self-reports (P = 0.01) and 55.78 ± 12.03 and 55.61 ± 8.50 (P = 0.85) in the parent proxy reports in the previous leprosarium and nonleprosarium settlement areas, respectively. In multiple linear regression, child education (β = 14.69; 95% CI: 8.69, 20.69), the absence of neglected and tropical diseases (β = 4.02; 95% CI: 0.66, 7.37), and child face washing habits (β = 5.54, 95% CI: 2.14, 8.95) increase health-related quality of life. However, a previous history of neglected and tropical diseases (β = -8.54; 95% CI: -12.93, -4.15) and the absence of hand washing facilities (β = -8.57; 95% CI, -15.22, -1.92) decrease the mean health-related quality of life. Based on child self-reports, one in four children from previous leprosarium areas had poor health-related quality of life compared to children living in none leprosarium areas. Children’s educational status, their daily habits of washing their face, not having neglected, and tropical diseases had improved health-related quality of life. To improve health-related quality of life, stakeholders should pay attention to and work on the early detection and treatment of neglected and tropical diseases, child education, and proper sanitation practices in the leprosarium community.

Validity and Reliability of the Peds QLᵀᴹ 4.0 Generic Core Scale in Indonesian Version in Children with Chronic Kidney Disease Undergoing Hemodialysis in the Dialysis Unit of Cipto Mangunkusumo Hospital

Background: The Peds QLᵀᴹ 4.0 Generic Core Scales is a modular instrument for measuring health-related quality of life (HR-QoL) in children and adolescents aged 2 to 18 years. The Peds QLᵀᴹ 4.0 GCS consists of 23 items applicable to healthy school and community populations and populations of children with acute and chronic health conditions. The Pediatric Quality of Life Inventory (Peds QLᵀᴹ 4.0 Generic Core Scales) is a modular instrument designed to measure health-related quality of life (HR-QoL) in children and adolescents aged between two and thirteen years. It measures health-related quality of life (HR-QoL) in children and adolescents with progressive chronic kidney disease (CKD), regardless of the underlying etiology, due to the need for regular follow-up visits, strict medication regimens, and dietary intake. Purpose: This study aimed to evaluate the validity and reliability of the Peds QLᵀᴹ 4.0 GCS Indonesian version in children with CKD undergoing hemodialysis (HD) in the Dialysis Unit of Cipto Mangunkusumo Hospital. Methods: This type of research is analytical and observational in nature. The Peds QLᵀᴹ 4.0 GCS were administered to 30 children and 30 parents recruited from a pediatric dialysis unit. This study was conducted at a pediatric dialysis unit at Cipto Mangunkusumo Hospital Jakarta, Indonesia, in Mei-Juni 2024. Validity was tested using Pearson product moment, and reliability was tested using Cronbach's alpha. Results: A total of 30 children and 30 parents undergoing hemodialysis agreed to participate. The average age of the patients was 8–18 years old. Cronbach’s alpha coefficient for the total Peds QLᵀᴹ 4.0 GCS (α child self-report 0.918; α parent proxy report 0.928). Conclusion: The Indonesian versions of The Peds QLᵀᴹ 4.0 GCS were valid and reliable instruments to measure the HR-QoL of children with CKD on hemodialysis. The Peds QLᵀᴹ 4.0 GCS can be applied to provide relevant evidence that helps the function of quality of life among Indonesian patients on hemodialysis in evaluating health programs.

Does adapting a self-report instrument to improve its cognitive accessibility for people with intellectual disability result in a better measure? − A cognitive interview study

Background and aimsWe investigated whether improving the cognitive accessibility of a widely used self-report measure leads to better understanding and more accurate answers in a sample of adults with mild intellectual disability and borderline intellectual functioning. Methods and proceduresWe undertook a series of cognitive interviews before and after adaptation of the instructions and selected items of an existing self-report measure of adaptive functioning. Interview results and participant feedback were supplemented with quantitative comparisons between participant and carer scores. Outcomes and resultsAdaptation based on participant experiences and preferences combined with evidence-informed guidelines improved understanding and accuracy. Self-report and carer-report scores showed greater convergence after adaptation; this occurred because people with intellectual disabilities appeared to understand the self-report measure more effectively. Conclusions and implicationsThe results show that adaptation of the self-report instrument to suit the needs and preferences of people with mild intellectual disability or borderline intellectual functioning leads to a more accessible measure and more reliable and valid results. Results also highlight the importance of complementing proxy reports with a first-person perspective in assessment as clients and informants may differ in their assessment of behavior and skills.

Psychogenic non-epileptic (functional) seizures in adults with intellectual disability and epilepsy: A matched case-control study.

To describe the characteristics of psychogenic non-epileptic (functional) seizures (PNES) in adults with epilepsy and intellectual disability (ID) and to establish differences and risk factors regarding psychosocial functioning between individuals with and without PNES. Adults with ID and epilepsy living in epilepsy care facilities in The Netherlands were screened for PNES by a neurologist. A control group consisting of people with epilepsy and ID, without PNES, was matched according to age, sex, and level of ID. Objective data were retrieved retrospectively from clinical notes of the resident. Standardized questionnaires and tests, adjusted for people with ID, were obtained from participants and their nursing staff. Differences were analyzed using paired t tests, Wilcoxon signed-rank tests, or McNemar's tests, appropriate for matched case-control studies. Conditional logistic regression identified PNES risk factors. Five hundred forty individuals were screened, of which 42 had PNES (point prevalence 7.8%). In total, 35 cases and 35 controls gave consent. Proxy reports indicated that PNES impacted daily life in 79% by adjusting the individual's schedule, and caused minor injuries in one-third. Those with PNES were mainly female (69%); had a mild (46%) or moderate (37%) level of ID; showed more symptoms of depression (p = .024), anxiety (p = .030), self-injurious behavior (p = .015); and experienced more negative life events (p < .001). Clinically relevant predictors of PNES were the number of negative life events (odds ratio [OR] 1.71, 95% confidence interval [CI] 1.12-2.53) and self-injurious behaviors (OR 5.27, 95% CI .97-28.81). Previously, PNES in individuals with ID and epilepsy were described mainly as a reinforced behavioral pattern, due to limited associations with psychiatric disorders. Our results demonstrate that this population does show individual psychosocial vulnerabilities when measured with instruments adjusted for this population, as indicated by proxy reports from daily caregivers. Viewing PNES as an involuntary response, especially for stress-prone individuals with ID, could reduce stigma and improve treatment.

Research Note: The Association Between Parity and Odds of Alzheimer's Disease and Dementias Status.

While parity is a significant factor influencing parental health, its relationship with dementia remains underexplored. This research note advances the literature by conducting a well-powered analysis of associations between parity (i.e., number of children) and Alzheimer's disease and dementias (AD/D) status in large-scale population data. The data contain a large number of AD/D cases (37,228 women and 19,846 men), allowing a range (1-10) of parity associations to be estimated precisely. Using proxy (adult child's) reports of parental AD/D status, we find that both fathers and mothers with grand multiparity have decreased odds of AD/D status, and the effect sizes become larger as parity increases, with 30-40% reduction in AD/D status at parities above 7. The association is stronger for mothers than for fathers. This finding differs from much of the prior literature and likely suggests the impact of parity, as one of the important life course contexts, on people's cognitive function and risk of having AD/D. Finally, we include population projections that consider how large changes in parity distributions over time may contribute to small elevations in AD/D rates.

Subsyndromes and symptom clusters: Multilevel factor analysis of behavioral and psychological symptoms of dementia with intensive longitudinal data.

Behavioral and psychological symptoms in dementia (BPSD) are dynamic phenomena with a high amount of intraindividual variability. We applied a multilevel framework to identify subsyndromes (between-person factors) that represent clinically relevant profiles of BPSD and identify symptom clusters (within-person factors) that represent contextually driven daily symptom experiences. This study used an intensive longitudinal design in which 68 co-residing family caregivers to persons living with dementia were recruited to proxy report on their care recipient's daily symptom experiences of 23 different BPSD for eight consecutive days (n=443 diaries). A multilevel exploratory/confirmatory factor analysis was used to account for nested data and separate within-person variances from between-level factor estimates. Exploratory factor analysis identified a 4-between 3-within factor structure based on fit statistics and clinical interpretability. This study offers major methodological and conceptual advancements for management of BPSD within Alzheimer's disease and related dementias by introducing two related but distinct concepts of subsyndromes and symptom clusters. Because behavioral and psychological symptoms of dementia (BPSD) are dynamic temporal phenomenon, this introduces measurement error into aggregate group-level estimates when trying to create subsyndromes. We propose a multilevel analysis to provide a more valid and reliable estimation by separating out variance due to within-person daily fluctuations. Using a multilevel exploratory factor analysis with intensive longitudinal data, we identified distinct and meaningful groups of BPSD. The four factors at the between-person level represented subsyndromes that are based on how BPSD co-occurred among persons with Alzheimer's disease (AD). These subsyndromes are clinically relevant because they share features of established clinical phenomena and may have similar neurobiological etiologies. We also found three within-person factors representing distinct symptom clusters. They are based on how BPSD clustered together on a given day for an individual with AD and related dementias. These clusters may have shared environmental triggers.

Health-related quality of life among pediatric patients with acute lymphoblastic leukemia: An exploratory cross-sectional study.

Improved survival rates broadened the pediatric oncology focus to include health-related quality of life (HRQoL). This cross-sectional study aimed to examine HRQoL by treatment phase and disease risk level in pediatric patients with B-cell acute lymphoblastic leukemia (B-ALL), including those in early survivorship. A subset of data from a larger prospective cohort study was analyzed. Data were collected from 73 patients (73 parent reports and 28 self-reports). Parent proxy and self-report PROMIS measures assessed HRQoL across treatment phases (early intensive, maintenance, and off treatment) and disease risk groups (standard vs high). Analyses assessed the relationship between parent proxy and patient self-reports and the differences in HRQoL among treatment phases and risk groups. Parent proxy reports generally indicated worse fatigue, pain interference, and mobility compared with patient self-reports. Self-reports in the early intensive treatment group suggested worse depressive symptoms, fatigue, mobility, and upper extremity function compared with those in later phases. Parent proxy reports showed worse fatigue and depressive symptoms in early intensive treatment group relative to those in later phases. Patient self-reports in the maintenance group demonstrated the best peer relationships scores. Parent proxy reports in the high-risk group reported significantly higher depressive symptoms and fatigue compared with the standard-risk group. Differences in HRQoL suggest targets for further assessment and intervention. The early treatment and immediate post-survivorship periods may represent particularly critical time points. Longitudinal studies with larger and diverse samples should further explore HRQoL trajectories in this population.

Respiratory functions, respiratory muscle strength and fatigue in patients with pediatric-onset multiple sclerosis: a comparative cross-sectional study.

To compare PwPOMS and healthy controls in terms of respiratory functions, respiratory muscle strength, and fatigue, and investigate the determining role of fatigue on respiratory parameters. Twenty-five PwPOMS and 15 healthy controls were included in the study. Maximum inspiratory pressure (MIP) and expiratory pressures (MEP) were measured. Respiratory functions were evaluated using spirometry, and predicted values were recorded for FEV1, FVC, FEV1/FVC, and PEF. Fatigue levels were assessed using the Pediatric Quality of Life Inventory Multidimensional Fatigue Scale (PedsQL-MFS). The FEV1%pred (p = 0.022), PEF%pred (p = 0.003), MIP (p = 0.001), and MEP (p = 0.019), cognitive fatigue self-reported score of PedsQL-MFS (p = 0.037), sleep-rest fatigue (p = 0.034), cognitive fatigue (p = 0.010), and total score (p = 0.005) of PedsQL-MFS Proxy Report were significantly decreased in PwPOMS compared with their healthy peers. Regression analysis showed that the general fatigue of self-reported PedsQL-MFS was a determinator for FEV1%pred (β= -0.467) and PEF% (β= -0.553), and total score PedsQL-MFS was a determinator for FEV1/FVC %pred (β= -0.599). PwPOMS had decreased respiratory muscle strength, FEV1, and PEF, with preserved FEV1/FVC and higher fatigue levels than their healthy peers. In addition, self-reported fatigue had a determining role in respiratory functions but not respiratory muscle strength in PwPOMS. This trial is registered on ClinicalTrials.gov under "NCT05123924" available at: https://clinicaltrials.gov/ct2/show/NCT05123924 .

Proxy reports of others’ behaviors: when are they more accurate?

ABSTRACT Surveys often ask people to report about someone else’s behavior. Two approaches to constructing a behavioral frequency judgment are recalling specific episodes of the other person’s behavior or using more general knowledge to infer a frequency judgment. A two-stage study was conducted with 40 roommate-pairs who maintained diaries for 7-days and then reported behavioral frequencies for themself and their roommate. Behavior regularity and relationship closeness were also measured. When general knowledge is cued, judgment error is negatively related to behavior regularity and relationship closeness, while cuing episodic-based recall resulted in less judgment error when regularity and relationship closeness are low.

The role of motivation in shaping social inclusion of people with intellectual disabilities in physical-sports activity contexts.

The present study aims to test a model in which basic psychological needs (BPN) satisfaction in physical-sport activity contexts is associated with self-determined motivation, which, in turn, would predict the social inclusion of people with intellectual disabilities. A total of 286 people with intellectual disabilities (53.5% men) who reported engaging in physical-sport activities responded to a validated questionnaire about the satisfaction of their BPN, motivation (using the Self-determination index [SDI]), and social inclusion. A Pearson's bivariate correlation and structural equation modeling were conducted. The resulting model was reanalyzed in a multigroup analysis to test its invariance across self and proxy reports. Positive associations were found between the satisfaction of the BPN and the SDI. However, the SDI and social inclusion were positively associated only in proxy reports (βself=0.07 vs. βproxy=0.30). The tested model established positive relationships between the BPN and SDI in autonomy (βself=0.21 vs. βproxy=0.18), competence (βself=0.47 vs. βproxy=0.53), and relatedness (βself=0.21 vs. βproxy=0.23). Further research is needed to understand the factors leading to discrepancies between participants and proxies when relating the SDI to social inclusion in the context of physical-sport activity. However, the results obtained suggest that it would be optimal to develop contexts of practice for people with intellectual disabilities in which the satisfaction of their BPN is favored and that this has a positive impact on their motivation and social inclusion.

Parental Mental Health, Gender, and Lifestyle Effects on Post-Pandemic Child and Adolescent Psychosocial Problems: A Cross-Sectional Survey in Northern Italy.

The exacerbation of psychosocial problems among children and adolescents during the coronavirus disease 2019 (COVID-19) pandemic necessitates an assessment of the long-term mental health impact of pandemic interventions. Focusing on both pandemic-related factors and demographic variables, such as gender and daily habits, an analysis was conducted to understand how these elements continue to affect young populations in the post-pandemic era. In April 2023, a comprehensive online survey was administered to families in South Tyrol, Italy, with children aged 7-19 years, to ensure age and gender representation. The survey included parent ratings and adolescent (11-19 years) self-reports using standardized instruments to measure the symptoms of mental health problems (Strengths and Difficulties Questionnaire, SDQ), anxiety (Screen for Child Anxiety Related Emotional Disorders, SCARED), and depression (Patient Health Questionnaire-2, PHQ-2). Statistical analyses included descriptive statistics, chi-square tests, and unadjusted odds ratios (ORs). Of the 4525 valid responses, 1831 were self-reported by adolescents. Notable gender differences in mental health outcomes were identified, along with significant demographic predictors, such as age, single parenthood, parental mental health problems, and immigrant background. Negative effects were associated with reduced family climate and increased screen time, whereas physical activity showed beneficial effects. Proxy reports overestimated adolescents' mental health problems, whereas self-reports tended to underestimate them. Persistent mental health problems and gender disparities highlight the need for a public health approach. This should include accessible support services, resilience building, targeted support for vulnerable families and gender-specific interventions.

The PompeQoL questionnaire: Development and validation of a new measure for children and adolescents with Pompe disease.

Genetic disorders pose great challenges for affected individuals and their families, as they must cope with the irreversible nature of the disease and a life-long dependence on medical assistance and treatment. Children and adolescents dealing with Pompe disease (PD) often struggle to keep up with their peers in physical activities. To gain valuable insights into their subjective experiences and better understand their perception and coping related to daily challenges linked to their condition and treatment, the use of standardized questionnaires is crucial. This study introduces the novel PompeQoL 1.0 questionnaire for children and adolescents with PD, designed for comprehensive assessment of both disease-specific FDH and HRQoL through self- and proxy reports. Content validity was ensured through patients' and parents' involvement at the initial stages of development and in subsequent cognitive debriefing process. Participants found the questionnaire easy to understand, answerable, relevant, and comprehensive. Adjustments based on feedback from patients and their parents improved its utility as a patient- and observer-reported outcome measure. After careful item examination, 52 items were selected, demonstrating moderate to excellent test-retest reliability for most scales and initial evidence for satisfactory construct validity. The PompeQoL questionnaire stands as a valuable screening instrument for both clinical and research purposes. Future research should prioritize additional revisions and larger validation studies, focusing on testing the questionnaire in clinical practice and trials. Nevertheless, the PompeQoL 1.0 stands out as the first standardized measure providing insights into disease-specific FDH and HRQoL among children and adolescents with various forms of PD.

Quality of life assessment in pediatric nephrotic syndrome in North Sumatera Province: Parent-and-child proxy report

Quality of life assessment in pediatric nephrotic syndrome in North Sumatera Province: Parent-and-child proxy report

Rising socioeconomic disparities in childhood overweight and obesity in Belgium

BackgroundChildhood overweight, especially obesity, significantly impacts children’s health and poses an increased risk of adult-onset diseases. This study aims to analyse the evolution of childhood overweight and obesity in Belgium from 1997 to 2018 and assess its variation across parental socioeconomic status (SES).MethodsThe Health Interview Survey, a cross-sectional survey representative of the Belgian population, has been conducted since 1997, with the latest survey conducted in 2018. This study focuses on children aged 2–17 years. Body Mass Index (BMI, kg/m²) was derived from self-reported data, supplemented with proxy reports for children under 15 years old. Overweight and obesity were classified using age/sex-specific cut-off points. Highest parental educational level served as the indicator of SES. In addition to reporting the overall prevalence and the 95% confidence interval (95%CI) of childhood overweight and obesity by year, this study examines the absolute difference in prevalence between SES groups (low minus high) and calculates the Odds Ratio (OR, adjusted for age and sex) to evaluate the relative difference.ResultsThe overall prevalence of childhood overweight rose from 13.6% (95%CI = 11.2-16.1%) in 1997 to 18.9% (95%CI = 16.3-21.5%) in 2018; while it remained stable for obesity, fluctuating between 5.4% and 6.3% over the same period. This increase was more pronounced among children with low SES compared to those with high SES. Consequently, the absolute difference between children with low and high SES increased over time from 8.0% points (pp) in 1997 to 14.9 pp in 2018 for overweight, and from 3.1 pp to 6.8 pp for obesity. In terms of relative inequalities, overall, children with low SES exhibited significantly higher odds of overweight and of obesity than those with high SES (OR varying between 2 à 3 for overweight and between 2 and 4 for obesity).ConclusionsThe escalating disparities over time highlight SES as a significant risk factor for childhood overweight and obesity. Addressing these inequalities requires interventions such as providing healthy meals and increasing sports opportunities at school. Additionally, it is recommended to regulate fast food outlets near schools and limit unhealthy food marketing, particularly because children with low SES are more exposed to such influences.

QOL-40. FAMILY MENTAL HEALTH SCREENING EARLY AFTER A DIAGNOSIS OF PEDIATRIC BRAIN TUMOR

Abstract INTRODUCTION A new diagnosis of a brain tumor in a child has significant emotional consequences for every member of the family. Despite this, early phases of oncologic care rarely provide formal mental health screening. METHODS In 2021, we implemented a mental health screening protocol for patients with a newly diagnosed brain tumor admitted to our pediatric intensive care unit (PICU) at the time of diagnosis, and their parents. Screening instruments were selected based on previous validation and relevance to both a brain tumor diagnosis and PICU admission. Parents were contacted by our team shortly after their child’s diagnosis and completed the screening within a month via an online interface. Parent proxy reports for children were used when necessary. Scores were shared with the family and neuro-oncology team. When indicated, supportive counseling and care coordination were offered. RESULTS Since 2021, 97 new brain tumor patients have met criteria for mental health screening. Of these, 72 patient and parent dyads were provided the screening protocol, and 31 fully completed the screening (mean patient age 7.3 yrs; 81% white; 58% male). Of the families that completed the evaluation, most parents (83%) reported their child’s diagnosis negatively impacted their health-related quality of life (HRQL), while 75% of children themselves reported a lower HRQL than population norms. Nearly half of children (44%) self-reported having symptoms outside of normal range for anger, anxiety or depression and 33% had abnormal scores for pain interference with their daily lives. More than half (65%) of families reported lower family functioning than population norms. CONCLUSION Families of children with a new diagnosis of brain tumor are at risk for impaired mental health and quality of life early after diagnosis. A systematic approach to assess and address these concerns early after diagnosis is needed.

Quality of life and functional vision in adolescents with surgically treated hydrocephalus in infancy.

To evaluate health- and vision-related quality of life (HR- and VR-QoL) and perceptual visual dysfunction (PVD) in adolescents with hydrocephalus surgically treated in infancy. In total, 23 adolescents (15 males and 8 females; median age 14.9 years) with hydrocephalus and 31 controls were evaluated using validated instruments to measure HR-QoL and VR-QoL. PVDs were reported by history taking in five areas: recognition, orientation, depth, movement and simultaneous perception. Adolescents with hydrocephalus and the parent proxy reports showed lower mean total Paediatric Quality of Life Inventory 4.0 scores (75.8 and 63.7, respectively) compared with controls (87.6 and 91.5), p = 0.016 and p < 0.0001. Parent-reported scores were lower than self-reported scores (p = 0.001). Adolescents with myelomeningocele (n = 10) showed lower physical health scores (p = 0.001). No VR-QoL difference was found between groups. PVDs were reported in ≥1 area by 14/23 hydrocephalus participants and 2/31 controls (p < 0.0001). Associations were found in the hydrocephalus group between VR-QoL and HR-QoL (rs = 0.47, p = 0.026) and number of PVD areas (rs = -0.6, p = 0.003). Adolescents with hydrocephalus and their parents reported lower HR-QoL and more PVDs. These problems indicate the need for not only ophthalmological follow-ups but also evaluation of QoL and PVDs in individuals with infantile hydrocephalus.