The Neuro LTC (long term conditions) research project aims to identify and better understand the factors and events that influence the care needs of people with long term neurological conditions, including Huntington’s disease.
The project will identify the factors that predict levels of care. It will also identify the events that can lead to an increase in care – either at home or with an admission to hospital. It will also identify the impact of fatigue for people living with Huntington’s disease.
The long term aim of the project is to help to better match available resources to individuals’ care needs.
The research study is organised by Dr Christopher Kipps, Consultant Neurologist at University Hospital Southampton NHS Foundation Trust. It is sponsored by University Hospital Southampton and is supported by the National Institute for Health Research (NIHR), Collaborations for Leadership in Applied Health Research and Care (CLAHRC) Wessex.
The researchers are currently looking for people to take part in a short survey.
There two surveys to complete. The first survey is for patients, caregivers and people who have been caregivers in the past. This survey asks you about your personal experiences of what affects the care that a person living with Huntington’s disease requires.
You can complete the survey online, on paper or over the phone. It usually takes about 15 minutes to complete the survey.
The second survey is for patients and asks about the impact of fatigue on your daily life.
You can also complete the second survey online, on paper or over the phone. It also usually takes about 15 minutes to complete the survey. You can complete the second survey at the same time as the first survey, at a later time, or not at all.
If you are interested in taking part and would like more information, please contact the research officer Sarah Fearn at S.Fearn@soton.ac.uk or on 07876818404.
You can also find more information on the study and a link to the online survey at: bit.do/NeuroLTC