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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.

The placenta and neurologic and psychiatric outcomes in the child: Study design matters

Much information exists about functions of the human placenta and about potential mechanisms by which the placenta may influence human health or disease...

Evolution of pulmonary inflammation and nutritional status in infants and young children with cystic fibrosis

Improved nutrition is the major proven benefit of newborn screening programmes for cystic fibrosis (CF) and is associated with better clinical outcomes.

Bronchial brushings for investigating airway inflammation and remodelling

Asthma is the commonest medical cause for hospital admission for children in Australia, affects more than 300 million people worldwide, and is incurable...

Collaborating with consumer and community representatives in health and medical research in Australia:

The objective of this tudy was to collaborate with consumer and community representatives in the Alcohol and Pregnancy Project from 2006-2008

Western Australian children with acute lymphoblastic leukemia are taller at diagnosis than unaffected children of the same age and sex

Acute lymphoblastic leukemia (ALL) is the commonest childhood malignancy in Australian children

Does Exposure to Asbestos Cause Ovarian Cancer? A Systematic Literature Review and Meta-analysis

The asbestos and ovarian cancer relationship is not well understood because of small numbers of women exposed to asbestos, small numbers of cases...