Phase 1 of the study took place at the Walton Centre NHS Foundation Trust, Liverpool. We believe that listening to our patients should be the starting point for any study and that the findings of our study would be driven by the patients themselves.
During the interviews and discussion groups, we asked people with neurological conditions about their experiences of the illness and their views on quality of life. Specifically, we asked them what is important for maintaining a good quality of life, what impact their illness has had on both their life and their quality of life, and how they dealt with the changes brought about by their illness.
We talked to patients representing all stages and types of the neurological illnesses we are targeting to obtain a broad range of views on quality of life. We found many common and some unique factors affecting their quality of life. This will be reflected in the following two key stages of the study: Forum with healthcare professionals and surveys with patients.
The Professionals’ Forum is crucial to TONiC. The Forum will utilise the opinions of healthcare professionals who work closely with neurological conditions to develop hypotheses on the way in which different factors influence the quality of life of affected patients.
We have developed an online forum open to all members of the neurology multidisciplinary team and invite them to complete a series of 6 questionnaires each lasting less than 5 minutes, on the nature and quality of life in specific neurological conditions.
The factors identified by patients and the consensus achieved between professionals will guide the inclusion of content for patient questionnaires and assist in the development of disease-specific quality of life models which we will test in subsequent stages of TONiC.
See: Professionals’ Forum
Demographic information will be collected from consented Participants’ hospital records for research purposes, such as year of birth, whether they are male or female, their diagnosis and their disability (if any).
Phase 2 runs concurrently with Phase 3.
The factors affecting quality of life, gathered from the interviews and the Professionals' Forum during phase 1, will be used to produce questionnaire packs.
These packs will be piloted with 520 participants attending the Walton Centre and a number of other specialist sites. This will allow participants and on-site professionals to go through the questionnaire packs and identify any problems that we may not have been aware of.
After completing the questionnaires, participants will be asked general questions about the relevance, clarity, ease of completion and any difficulties they found with the questionnaire.
This phase is important as it assesses the applicability, relevance and completeness of the draft questionnaires before they are released across the UK.
Once we have piloted the questionnaire packs in paper format, we will programme them for web-based completion. People attending the Walton clinics will be asked to pilot these web questionnaires on a laptop in clinic and at home, and give us feedback.
Once the questionnaires have been carefully tested in these ways, they will be available through our network of collaborating sites for MS and MND and the Walton Centre NHS Foundation Trust, to people with these conditions throughout the UK.
People with these conditions will be able to register their intent in doing the questionnaires, and provide brief personal details so that they can be sent or emailed the questionnaire pack.
Phase 3 of this study will involve the administration of the questionnaire packs to people from different parts of the UK. It is very important for us to recruit a large number of people, with all types and stages of the conditions. We want this research to help us improve services for all people suffering these conditions so we need to take account of a range of opinions.
If you are a person with MS or MND we want to understand how your quality of life has been affected by your illness, so we can improve care for you and people like you in future. Don't rely on other people to answer on your behalf as their viewpoint may be different from yours; give us your answers based on your experience.
If you are a professional who wants to improve quality of life for people with MS or MND, there are several ways you can help.
1. Join the Professionals' Forum and spend about 5 minutes per week (for 6 weeks) doing web-based questionnaires.
Read more about the Professionals' Forum here.
Register for the Professionals' Forum here.
2. Inform your patients about TONiC in case they want to take part
You can print a flyer/poster here
3. The default route for patients to enter TONiC is to join though one of the collaborating sites. Many of the major centres caring for people with MS or MND are part of TONiC and if you have professional contact with patients with MS or MND who might wish to join, your easiest course is to refer them to their closest collaborating site.
However, we know that not all people suffering from MS or MND are under the care of a specialist centre and we do want to include the views and experiences of every patient. To avoid discriminating against people who are not able to access any collaborating centre, there is a route for people with MS or MND volunteering to join TONiC by self referral.
This route involves any health care professional completing a demographic sheet on the patient’s behalf, if the patient so requests and providing the patient provides you a copy of their signed consent for you to do so.
Complete brief demographic details if your patients show you a signed consent to do so.
Participants who are within one year of their diagnosis at the time they first enter TONiC, are now been invited to join a longitudinal study.
We are interested to learn how quality of life changes over time in patients with MS and MND. Currently, little is known about the long term effects of neurological conditions on quality of life. The way in which we can capture this vital information from patients is to recruit those who have been recently diagnosed (within one year), and to ask them to complete a fresh questionnaire at different time points over the course of five years.
Consenting participants will be provided with the shortest available version of the questionnaire pack, and asked to complete it several times over the course of five years. Please see below for the timepoints at which questionnaires will be sent out upon return of their phase 3 questionnaire.
We understand that people may join phase 4 and then drop out; the analysis plan ensures that even if the volunteer only does a few of the repeat packs, invaluable information can be gained about how the illness changes over time. Therefore we encourage anyone who does a pack within the first 12 months after diagnosis to join Phase 4. Participants will receive a telephone call prior to each timepoint to ensure they are still happy to be part of this important ground breaking research.