Neuro LTC: Assessing Baseline Factors, Critical Events and Fatigue in Long Term Neurological Conditions

Theme 2

Ageing and Dementia



Research aims and questions

1) Identify and better understand baseline and critical events factors that predict care requirements and unscheduled increase in care.
2) Facilitate future research into risk stratification and the transformation of the delivery of neurological care.
3) Improve access to appropriate neurological resources

This project has been substantially extended and expanded since it first started in September 2016. We now have 10 sites across Wessex recruiting participants to the project, with almost 1000 patients and carers who have taken part. The end of the project has been extended until 2021.

We have also been able to add an additional perspective to the study, looking at the effects of fatigue on the care needs of people living with long-term neurological conditions.

Output
The first set of data has now been analysed and a paper looking at the causes of crisis (critical events) for people living with Parkinson's disease is recently ready for submission. Future planned papers include analyses of the causes of crisis across a range of long-term neurological conditions (epilepsy, motor neurone disease, multiple sclerosis, Huntington's disease and Parkinson's disease), the baseline factors that affect care needs in these conditions, the factors and activities that help to maintain well-being, and the impact of fatigue on the care needs of people living with these long-term conditions.
Impact
Initial findings are already helping to inform the development of an online platform aimed at helping patients and their carers manage their condition and their care.
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