Neuro LTC Study Version 1.0

  • Research type

    Research Study

  • Full title

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

  • IRAS ID

    203783

  • Contact name

    Christopher Kipps

  • Contact email

    christopher.kipps@uhs.nhs.uk

  • Sponsor organisation

    Southampton University Hospital

  • Duration of Study in the UK

    1 years, 0 months, 7 days

  • Research summary

    Many conditions involving the nervous system have a long-term impact on quality of life, and needs for treatment and care vary over time. There is often a a mismatch between the needs of patients at different stages in their illness, and the clinical and social care support services needed to help them properly. This project aims to gather data to better understand care needs for five major neurological conditions: multiple sclerosis, epilepsy, Huntington’s disease, motor neurone disease, and Parkinson’s disease. We wish to identify factors that predict care needs, and the various problems (critical events) that might lead to an increase in these needs for the five conditions. We are particularly interested in the extent, and the impact, of fatigue on the care needs of people with long-term neurological conditions.

    The study will involve the use of surveys and focus groups with service users (patients and caregivers). By identifying the baseline factors predicting care need, events that increase this need, and the features of fatigue that influence personal care needs, the study aims to improve efforts to work out who needs higher levels of support, and how best to match this need to service delivery.

  • REC name

    South Central - Hampshire A Research Ethics Committee

  • REC reference

    17/SC/0267

  • Date of REC Opinion

    13 Jul 2017

  • REC opinion

    Further Information Favourable Opinion