Many neurological conditions have a long-term impact on quality of life with varying
requirements for intervention and care over time. This has the potential to
create a mismatch between the needs of patients at particular stages in their
illness and the skill levels of clinicians and available resources required to
assist them appropriately. This project aims to identify the baseline
factors that influence everyday care requirements and to identify the critical
events that have the potential to lead to an increase in care requirements. In
many neurological conditions, there may also be ‘hidden’, less evident or more
subjectively perceived factors that influence care requirements, of which
fatigue may be amongst the most common. This project also includes research
into the prevalence and effects of fatigue in neurological conditions.
The solution: This research focuses on five neurological conditions: epilepsy, Huntington's
disease, motor neurone disease, multiple sclerosis, and Parkinson's disease. We will use surveys and focus groups with service users (patients and caregivers) to identify the factors that help to maintain an individual’s optimal level of living with the neurological condition (baseline factors), the critical events
that can cause a change in care requirements in each of the five neurological conditions, and the impact of fatigue. By identifying and better understanding baseline factors, critical events and the features of fatigue in long term neurological conditions, this project will help to inform future research into the stratification
of care for persons with long-term neurological conditions, aiming to match service users more effectively to appropriate clinical and social care resources.
The study aims to:
1) Identify and better understand the baseline factors and critical events that help
predict care requirements.
2) Identify and better understand the prevalence and impact of fatigue.
3) Facilitate and inform future research into the allocation of neurological
resources and the personalisation of neurological care.