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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
Ctherine
Malone
Catherine.Malone@thewaltoncentre.nhs.uk
Miss
Study
Team
tonic@thewaltoncentre.nhs.uk
Study
Team
wcft.tonic@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 & 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's 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 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 mnths, 12 mnths, and 2 yrs 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 QoL.
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: Qualitative;
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.
Miss
Study
Team
tonic@thewaltoncentre.nhs.uk
Ctherine
Malone
Catherine.Malone@thewaltoncentre.nhs.uk
Study
Team
wcft.tonic@nhs.net
Prof
Carolyn
Young
carolyn.young@thewaltoncentre.nhs.uk
The study is sponsored by THE WALTON CENTRE NHS FOUNDATION TRUST and funded by MOTOR NEURONE DISEASE ASSOCIATION .
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 12495
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