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032 Clinical audit research and evaluation for motor neurone disease (CARE-MND): alignment with clinical care standards
  1. Emily Beswick1,2,
  2. Judith Newton1,2,3,
  3. Suvankar Pal1,2,3,4,
  4. Shuna Colville1,2,3,
  5. Richard Davenport5,6,7,8,9,10,
  6. Ian Morrison4,
  7. Robert Swingler1,3,
  8. George Gorrie3,11,
  9. Antony Bateman1,3,6,7,8,9,10,
  10. Siddharthan Chandran1,2,3,5
  1. 1Centre for Clinical Brain Sciences, University of Edinburgh, UK
  2. 2Anne Rowling Regenerative Neurology Clinic, Royal Infirmary, Edinburgh, UK
  3. 3Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, UK
  4. 4Department of Neurology, NHS Tayside, UK
  5. 5Department of Clinical Neurosciences, NHS Lothian, Edinburgh, UK
  6. 6Centre for Genomic and Experimental Medicine, Institute of Genetics and Molecular Medicine, University of Edinburgh, Edinburgh, UK
  7. 7The Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK
  8. 8Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK
  9. 9South East Scotland Genetics Service, Western General Hospital, Edinburgh, UK
  10. 10Department of Neurology, Lothian, UK
  11. 11Institute of Neurosciences, NHS Greater Glasgow and Clyde, Glasgow, UK


Aims To establish 14 Key Performance Indicators (KPIs) of clinical care to provide a prospective audit framework to review routinely collected data fields on the Care Audit Research Evaluation (CARE-MND). Based upon Scottish and UK motor neuron disease (MND) standards of clinical care outlined in HIS/QIS Neurological Standards (2009) and NICE MND Guidelines (2016).

Methods 14 KPI categories of clinical care were reviewed. The completion percentage of 53 fields from CARE-MND were analysed for deceased people with MND (pwMND) diagnosed between 01/01/2015 and 31/12/2018.

Results There was a 73% average completion in data capture for deceased patients diagnosed in the specified range for the 14 KPI areas of clinical care.

Conclusions The introduction of CARE-MND as a research register and tool to support clinical care has resulted in more complete routine data capture of information which can be used to audit and improve delivery of care. The KPI audit framework will be repeated in the future to assess variation in data capture.

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