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How Well Does the EQ-5D-Y-5L Describe Children With Intellectual Disability?: “There's a Lot More to My Child Than That She Can't Wash or Dress Herself.”

The EQ-5D-5L is a generic health utility instrument for measuring health-related quality of life (HRQoL), with self-report and proxy report versions for children (EQ-5D-Y-5L). Children with intellectual disability (ID) are a heterogeneous population whose impairments and comorbidities place them at risk of poor HRQoL. This study aimed to describe the content validity and suitability for children with ID of a proxy report version of the EQ-5D-Y-5L as seen by their caregivers.

What does better look like in individuals with severe neurodevelopmental impairments? A qualitative descriptive study on SCN2A-related developmental and epileptic encephalopathy

There are limited psychometric data on outcome measures for children with Developmental Epileptic Encephalopathies (DEEs), beyond measuring seizures, and no data to describe meaningful change. This study aimed to explore parent perceptions of important differences in functional abilities that would guide their participation in clinical trials.

Verschlimmbesserung: Craniospinal Radiotherapy Is Essential in WNT Medulloblastoma Patients

Standard-risk WNT medulloblastoma patients have an excellent prognosis using the combination of standard dose craniospinal radiotherapy (CSI) followed by platinum and alkylator based chemotherapy. A recent pilot study that attempted to completely omit radiotherapy was terminated early as all patients relapsed rapidly. The study highlights that therapy is the most important prognostic factor, with CSI still required to cure even the most favorable subgroup of medulloblastoma patients. 

The Positive Aspects of Being the Parent of a Trans Child: Findings from Trans Pathways

The existing literature exploring the experiences of parenting a trans child tends toward reporting the challenging aspects of the parental journey. Studies also reference positive experiences such as enhanced parent-child connectedness and affirmation of personal values. Limited dedicated research focused on the positive aspects of parenting a trans child exists. We aimed to better understand positive parental experiences accordingly.

Socioeconomic representativeness of Australian, Canadian and British cohorts from the paediatric diabetes AdDIT study: comparisons to regional and national data

Given limited data regarding the involvement of disadvantaged groups in paediatric diabetes clinical trials, this study aimed to evaluate the socioeconomic representativeness of participants recruited into a multinational clinical trial in relation to regional and national type 1 diabetes reference populations. 

The effectiveness of community friendship groups on participant social and mental health: a meta-analysis

Social disconnectedness and isolation are risk factors for poor mental health. Community-based friendship group interventions have been designed to increase an individual's social capital and consequently their mental wellbeing. Structured and unstructured friendship groups reflect two distinct approaches to friendship group interventions.

The Effectiveness of Strategies to Improve User Engagement With Digital Health Interventions Targeting Nutrition, Physical Activity, and Overweight and Obesity: Systematic Review and Meta-Analysis

Digital health interventions (DHIs) are effective in improving poor nutrition, physical inactivity, overweight and obesity. There is evidence suggesting that the impact of DHIs may be enhanced by improving user engagement. However, little is known about the overall effectiveness of strategies on engagement with DHIs.

Severe outcomes of malaria in children under time-varying exposure

In malaria epidemiology, interpolation frameworks based on available observations are critical for policy decisions and interpreting disease burden. Updating our understanding of the empirical evidence across different populations, settings, and timeframes is crucial to improving inference for supporting public health.

The use of honey in the perioperative care of tonsillectomy patients-A narrative review

Tonsillectomy is one of the most common surgical procedures in childhood. While generally safe, it often is associated with a difficult early recovery phase with poor oral intake, dehydration, difficult or painful swallowing, postoperative bleeding, infection and/or otalgia.

High-flow nasal oxygen for children's airway surgery to reduce hypoxaemic events: a randomised controlled trial

Tubeless upper airway surgery in children is a complex procedure in which surgeons and anaesthetists share the same operating field. These procedures are often interrupted for rescue oxygen therapy.