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Showing results for "Neuromuscular disorders "

Clinical Predictors of Respiratory Failure in Paediatric Neuromuscular Disorders

This research project is a collaboration between The Kids Research Institute Australia, Muscular Dystrophy Western Australia, Perth Children’s Hospital and Curtin University.

Research

Interobserver Agreement When Diagnosing Hypoventilation in Children With Neuromuscular Disorders

Neuromuscular disorders can lead to nocturnal hypoventilation. Accurate diagnosis of hypoventilation is imperative to guide treatment decisions. This study determined interobserver agreement for a number of definitions of nocturnal hypoventilation in children and adolescents with neuromuscular disorders.

Research

Parent Carer Quality of Life and Night-Time Attendance in Non-Ambulant Youth with Neuromuscular Disorders

To describe and explore carer quality of life and night-time attendance to their child in parents of non-ambulant youth with Neuromuscular Disorders. A cross-sectional population-based, comprehensive survey including the Adult Carer questionnaire, measures of social context and youths' physical status. Associations between carer-QoL or frequency of parents' night-time attendance with independent variables were explored using linear and logistic regression models, respectively.

Research

Mental wellbeing in non-ambulant youth with neuromuscular disorders: What makes the difference?

Mental wellbeing was independently associated with academic achievement and perceived family support but not with physical health variables

Research

A fine balance and a shared learning journey: Exploring healthcare engagement through the experiences of youth with Neuromuscular Disorders

Explored Youth with Neuromuscular Disorders perceptions of health, health behaviors and healthcare engagement

Research

Quality of Life and Psychosocial Well-Being in Youth With Neuromuscular Disorders Who Are Wheelchair Users: A Systematic Review

To investigate quality of life (QOL) and psychosocial well-being in youth with neuromuscular disorders (NMDs) who are wheelchair users.

Research

Factors influencing participation in home, school, and community settings by children and adolescents with neuromuscular disorders: A qualitative descriptive study

This study explored how children and adolescents with a neuromuscular disorder (NMD) and their parents experienced barriers and enablers to the child's participation.

Research

Developing clinical predictors of disease progression in children with neuromuscular disorders to prevent future respiratory failure

Graham Hall GL BAppSci PhD CRFS FANZSRS FThorSoc FERS Honorary Research Associate Honorary Research Associate Professor Graham Hall is an

News & Events

The Kids study hopes to help kids with neuromuscular disorders sleep more easily

Mackenzie was 10 months old when her parents, Jodie and Scott, were given the life-changing news that their daughter would never walk.

Rare Diseases

Neuromuscular disorders include many rare conditions, such as Duchenne Muscular Dystrophy and Spinal Muscular Atrophy, that adversely impact respiratory health.