More from the
MEA article about the toolkit. FAQ's
https://meassociation.org.uk/mea-cat/
The following is the complete FAQ section copied from the linked article.
(I haven't put it in a quote box to make it possible to multiquote sections for discussion)
How is a clinical assessment toolkit used?
As noted above, the main use is for clinical assessment. ME/CFS is so variable in the type and severity of difficulties it causes, that it can be very hard to explain.
We have made sure the MEA-CAT covers all the main problems and difficulties that people with ME/CFS face, using language that makes sense for people with the condition and, as far as is possible, is easy for them to use. There is also plenty of opportunity to add extra information and detail if you wish, so nothing important is missed.
It is expected that you will be given access to the MEA-CAT (either electronically via an App or via paper copies) before you attend an NHS ME/CFS specialist service for help and support. This will give you opportunity to complete the tools in your own time and at your own pace. This helps you manage your activity levels, reduces the demands of clinic appointment(s) and also means you can be confident that nothing important has been missed.
The MEA-CAT and it's patient reported outcome measures (or PROMs) can be completed regularly as a means of monitoring your condition and progress. So, the specialist service should ask for them to be completed while you wait for a referral, during your time with the service, and after you have been discharged.
Once completed, your answers to each of the PROMs will be added up to produce ‘scores’. If you are using a digital App this will be done automatically. The final score is often not very meaningful unless you are familiar with the assessment. So, each PROM also has a ‘report card’ which gives a summary of your results. This is the part which is most useful to you and to clinicians involved in your care.
As well as for use by NHS ME/CFS specialist services, to enable a better understanding of their patients and their needs, the MEA-CAT can be used by people who are not being seen by specialists.
We have designed a public-facing App (see above) that is free to use (with a subscription option that currently allows for the exporting of reports). It means the PROMs can be used at any time and the scores will be calculated automatically. This will help you to better understand your difficulties, and share them with e.g., your carers or GP, and to help track changes over time. The App also includes a Support function that enables access to all of the ME Association's services and to it's expert literature.
The MEA-CAT can also be downloaded and each PROM completed manually (see above).
It is expected the toolkit will be of interest to researchers in the UK and overseas.
Who has access to my data?
You. Whether you download the Toolkit PROMs from the website and use them manually, or you download the App, you are the only person who can see your answers. It is your decision whether you wish to share them with anyone else.
How have people with ME/CFS been involved?
As mentioned above, a key, unique aspect of this project is that it is a patient-led co-production between people with ME/CFS and clinicians working in NHS ME/CFS specialist services.
This is to ensure that the toolkit provides information that is important and relevant to both parties and is easy to use. Ensuring the ‘patient voice’ is heard is central to the project. We included a patient advisory group in the development process and we have tested each PROM on the ME/CFS community via promotions in the MEA e-Newsletter. To this end, thousands of people took part and their feedback has been invaluable.
Including people with severe ME/CFS has also been a priority. We wanted to ensure their difficulties were recognised and the PROMs were as easy as possible to complete. People with severe ME/CFS were included in our advisory group, and we took advice from the 25% ME Group (a charity for people with severe ME) and configured the tools to be as accessible as possible.
It is a measure of the success of those strategies that about 20% of participants had severe ME/CFS. This is a higher proportion than other large questionnaire surveys, such as DecodeME.
Why are professionals from specialist NHS ME/CFS services?
As well as the patient advisory group, there is a clinical advisory group. This includes people who work in NHS ME/CFS specialist services from a range of professional backgrounds and types of service.
An important factor influencing whether an innovation is taken up in clinical practice is whether it is ‘fit for purpose’. That is, whether it is easy for clinicians to use, provides the information needed, in a way that is needed, and supports (or at least, does not distract from) all the other aspects of care and practice that clinicians need to provide.
The clinical advisory group has contributed to every stage of the project. We realise that some people will consider it controversial to work with clinicians, but we believe that working with them in partnership is beneficial in order to influence their decisions and to bring positive change to established practice.
Why are there so many questions in the assessments?
We have made the assessment tools as short as possible. One element of development phase was to remove any questions which were ‘redundant’ or duplicated other questions.
However, we acknowledge that the TIMES (assessing symptoms) and the MEAQ (assessing activity levels/disability) are still quite long. This is because ME/CFS causes a lot of different types and severity of problems, so if there needs to be a lot of questions to be comprehensive. However, they have been broken into sections to make it easier to pace and take breaks.
They are also designed so that the sections form ‘stand alone assessments’ which can be used on their own. For example, if you wanted to focus on sleep problems or pain (as far as symptoms were concerned), then after the initial assessment you could just complete these subscales without completing the whole assessment to monitor these issues.
We have also minimised the cognitive demand of completing the toolkit by keeping the questions as short as possible, using accessible formats andstyling (based on recommendations for people with dyslexia) and using multiple choice answers with a consistent format.
Why not use objective measures such as activity monitors or heart rate monitors?
Technology such as heart rate monitors have a great deal to offer people with ME/CFS. They are great for measuring an individuals’ day to day variability and to monitor longer term changes, or outcomes.
However, they are a non-specific, or proxy measure. For example, a step counter will tell you how many steps you have taken that day, but it won’t tell you what you were doing, or how you had to adapt other activities to do those steps, nor the consequences of doing them. So, although it gives you an idea of ‘how you are doing’, it doesn’t give the detail to support discussions and decision-making such as developing a care and support plan.
In the future, it is hoped it will be possible to combine the toolkit with technological objective measurements to get the best of both worlds. However, there needs to be a lot more research into the best parameters to measure, the best way to measure them, how accurate and reliable they are, and to develop inexpensive and easy to use formats, before recommendations can be made for use in clinical practice, or for research.
meassociation.org.uk
