A Southampton-led study is gathering the views of those with neurological conditions across Wessex to better identify and meet different care needs, and inform research into better care services.
Patients with Huntingdon’s disease, Parkinson’s disease, motor neurone disease, multiple sclerosis and epilepsy, as well as their carers and former carers, across Wessex are being asked for their views and experiences for a study aiming to transform their care.
Known as Neuro LTC, the study is led by Professor Chris Kipps from University Hospital Southampton NHS Foundation Trust. The principle investigator for Southampton, lead nurse and Wessex coordinator is Sandra Bartolomeu Pires.
It is using questionnaires to ask 1000 participants from eight different sites across the region what they feel are the most influential factors affecting their health. The researchers hope the study will highlight what patients and carers consider most important for their quality of life, so that healthcare providers and researchers can focus on these areas.
Identifying what matters
Designed by University of Southampton research fellow Dr Sarah Fearn, the study is engaging patients with five long term neurological conditions.
The study team are gathering information on usual care needs and times of crisis when their needs escalate, both from those affected and from carers or former carers. They are also asking those affected about the impact of fatigue.
People with a condition complete two surveys anonymously online, which together take around 45 minutes. They can do this on paper or over the phone, while carers and former carers do the same for the relevant questions.
Opened in October 2017 the study runs to the end of 2020, with the team just over half way to the number of people they want to reach. Initial analyses are already starting to inform services at University Hospital Southampton.
Making a difference
As initial data have revealed that patients with Parkinson’s disease are interested in exercise classes to help manage their condition, the study team are collaborating with Rachel Chappell to adapt University Hospital Southampton’s My Medical Record online self-management service for patients to add a feature to direct those with Parkinson’s to local classes.
Further down the line, the researchers hope to work with My Medical Record to use data from the study to help predict and prevent moments of crisis, for example relating to mental health issues or falls.
Posted on Friday 14 June 2019