We'd like your feedback
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Prof
Carolyn
Young
carolyn.young@thewaltoncentre.nhs.uk
Miss
Study
Team
tonic@thewaltoncentre.nhs.uk
Debbie
Atkinson
debbie.atkinson6@nhs.net
Jonathan
McGregor
jonathan.mcgregor@nhs.net
jennifer
burns
jenni.burns3@nhs.net
Ctherine
Malone
Catherine.Malone@thewaltoncentre.nhs.uk
Study
Team
wcft.tonic@nhs.net
Chris
Bates
christopher.bates3@nhs.net
Cerebrovascular diseasesDemyelinating diseases of the central nervous systemSystemic atrophies primarily affecting the central nervous systemInjuries to the head
This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.
Quality of Life (QoL) for people with disabling neurological conditions is affected by a range of factors, which have received considerable previous research attention. However, clinicians’ knowledge could be enhanced by two areas of additional enquiry.
1) Wide consultation: a) Interviewing a range of people with the conditions (First stroke, traumatic brain injury, multiple sclerosis, neuromyelitis optica, spinal conditions, motor neurone disease), about factors influencing QoL; b) Multi-disciplinary Panel- patients and clinicians- experienced in the conditions; c) Draft Questionnaire assessed for relevance by people with the conditions. Our earlier work suggested the importance of QoL factors like fatigue. We will utilise suitable previously-validated condition-specific QoL measures. It is possible that unvalidated or little-tested QoL factors will be suggested If so, we will develop a new measure and test using c); d) Focus Groups- patients’ and clinicians’ opinions on QoL factors, and priority factors for analysis. Such analysis would have greater validity than that used previously as it would reflect a wide range of patient and clinician opinion
2) Testing factors for QoL-influence: e) Self-report Questionnaire data from a large Cross-Section of people with the conditions; f) To assess QoL over time, questionnaire participants offered the choice to volunteer to complete the Questionnaire 6 months, 12 months, and 2 years later.
Data would be analysed using statistical techniques to determine the nature and strength of relations between different factors. The researchers will develop and test models of factors affecting QoL and compare whether models vary between conditions.
The model structure reflects World Health Organisation impairment, activity, and participation areas. The benefit of this approach is that we are testing factors which reflect concerns of people experienced in the conditions, to develop a model which may assist interventions to improve Quality of Life.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Cohort study;
You can take part if:
You may not be able to take part if:
Exclusion criteria:- 1. Not capable of informed consent 2. Have not given informed consent 3. Suffering from a concomitant serious medical or psychiatric condition
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
jennifer
burns
jenni.burns3@nhs.net
Chris
Bates
christopher.bates3@nhs.net
Prof
Carolyn
Young
carolyn.young@thewaltoncentre.nhs.uk
Ctherine
Malone
Catherine.Malone@thewaltoncentre.nhs.uk
Jonathan
McGregor
jonathan.mcgregor@nhs.net
Study
Team
wcft.tonic@nhs.net
Debbie
Atkinson
debbie.atkinson6@nhs.net
Miss
Study
Team
tonic@thewaltoncentre.nhs.uk
The study is sponsored by THE WALTON CENTRE NHS FOUNDATION TRUST and funded by MULTIPLE SCLEROSIS SOCIETY .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 35238
You can print or share the study information with your GP/healthcare provider or contact the research team directly.
