Specialised Commissioning Alert: Paediatric neurosciences

Showing posts with label Paediatric neurosciences. Show all posts

4 July 2019

An investigation into the association between quality of care quality and outcomes among children and young people with epilepsies in England concludes that

among adolescents with epilepsy, greater involvement of tertiary specialists in paediatric care is associated with decreased all-cause mortality in the period after transition to adult services.
Reduced access to an epilepsy specialist nurse was associated with an increase in paediatric epilepsy admissions.

Data: Epilepsy12 national clinical audit, death registrations from the UK Office for National Statistics and data for unplanned hospital admissions from Hospital Episode Statistics.
Nuffield Trust blog: Invest early: how to improve the health of young adults with epilepsy

Based on discussion of current approaches to the measurement of quality of life in Spinal Muscular Atrophy, the report highlights four possible strategies for improving the quantity and quality of data available to inform decision makers in the context of rare diseases:

Bespoke data collection which is relevant to health technology assessment decision makers;
Simple economic modelling methods, which reflect the evidence available at the time of the assessment;
Collaboration among the different parties involved; and
Identifying what is ‘good enough’ to inform decision making on use at the time of launch or of the health technology assessment process.

New approaches to research could facilitate health technology assessment processes and improve patients’ access to cost-effective treatments for rare diseases.

This audit, known as Epilepsy12, shows incremental improvements in some areas of paediatric epilepsy service provision alongside a considerable need for improvement in others.
The report includes the first ‘yearly snapshot’ of the organisation of paediatric epilepsy services for children and young people in England and Wales as well a case study of how paediatric epilepsy services have used their Epilepsy12 results to identify and undertake local quality improvement activities.

Alan Turing Institute

New research published in Scientific Reports (see below), demonstrates that machine learning methods can predict with a 35% improvement in accuracy whether a cystic fibrosis (CF) patient should be referred for a lung transplant, in comparison to existing statistical methods. It is the first machine learning study to make use of a dataset representing 99% of CF patients living in the UK, the CF Registry.
The research,has been generated through a partnership between The Alan Turing Institute and the Cystic Fibrosis Trust.

Reference: Prognostication and Risk Factors for Cystic Fibrosis via Automated Machine Learning Ahmed M. Alaa & Mihaela van der Schaar .
Scientific Reports vol8, Article number: 11242, 26 July 2018

No literature was identified regarding the clinical effectiveness of sensory rooms for paediatric patients with neurocognitive disorders. Additionally, no evidence-based guidelines were identified regarding the use of sensory rooms or environments for paediatric patients with neurocognitive disorders.

Using organisational surveys, patient and carer surveys, case note reviews, and routine national datasets, this study reviews the quality of care provided to children and young people with a chronic neurodisability (using the cerebral palsies as exemplar conditions), examines the interface between care settings; and assesses the transition of care from paediatric to adult services.

Improving the experiences of people who use services
NHS Providers 7 March 2018
Sharing learning around patient experience from vanguards including:

Specialist care closer to home - integrated neurology nurse at the Neuro Network vanguard at Walton Centre, Liverpool.
Reducing the need to travel - epilepsy specialist nurse providing support and practical care to children treated at Evelina London Children's Hospital closer to home.