TONiC – and introduction
Neurological conditions are known to affect quality of life in a number of ways with some factors having been found to be common to several different neurological conditions and others specific to a particular condition. TONiC is interested in investigating factors affecting quality of life in neurological conditions, using the diseases Multiple Sclerosis (MS) and Motor Neurone Disease (MND) as a starting point.
TONiC is a nation-wide study involving thousands of patients with MS and MND. Our aim is to collect data in the form of questionnaires which will help doctors and other healthcare professionals to tell how the disease impacts on people’s lives over time. From this, the factors that influence quality of life can be identified. This is quite an undertaking; the study has been running for three years now and over 3000 patients have taken part as well over 1500 relatives, family members or carers of people with these conditions. We believe that the information we gather will have a positive impact on the treatment and care that people receive.
What we hope to achieve
It is hoped that people with the conditions of MS and MND will find the questionnaires relevant and that it will enable them to give their opinions on matters surrounding quality of life that are important to them. During the developmental stages of the questionnaires, interviews were conducted with patients to investigate what matters were important to them in terms of quality of life; this has ensured that the questionnaires were developed in a patient-led way as they have come from people in similar situations. From there, the questionnaires used for data collection were derived.
The more people that take part in this study the more able we will be to use the results to improve the lives of people with these conditions. All that is needed to qualify to participate is to have a diagnosis of any form of MS or MND. We want relatives, friends or carers to get involved as well because their viewpoints will prove invaluable when giving a complete picture of a patient’s quality of life.
What’s involved
Questionnaires will be sent out with a prepaid envelope for you to send them back. They are quite long, covering a range of questions from your social situation to your beliefs about health and how your symptoms affect your day-to-day life.
The TONiC study has just opened up recruitment for people to take part in the longitudinal phase. This means ‘over time’. People who have had a diagnosis within the last 12 months will be asked to complete a slightly smaller version of the questionnaire at set points over the months to come.
We are truly grateful for all those that have participated so far. Their contribution will help shape future care. Now, at this very important stage of our research, we need as many newly diagnosed patients to take part. This longitudinal data is much more informative and will give clinicians around the globe a much greater picture of how lives are changed by these diseases.
As well as newly diagnosed patients, we are also still extremely keen to hear from patients however far along in their diagnosis they are, from as many different parts of the country as possible, from a variety of ages, with different types of MS and MND. We need to ensure that we are collecting representative data and an important factor in this is to ensure that as many people are given the opportunity to take part in TONiC as possible.
How to get in touch
To learn more about TONiC, see where your nearest TONiC site is and to find information on how to take part, visit http://tonic.thewaltoncentre.nhs.uk/, email us at tonic@thewaltoncentre@nhs.uk or telephone 0151 529 5668.
TONiC 