The ME Association Clinical Assessment Toolkit (MEA-CAT)

The MEA's Clinical Assessment Toolkit App is now here!

The MEA-CAT project was funded by The ME Association and led by Prof Sarah Tyson (University of Manchester), who has ME herself.

The aim is to develop a series of questionnaires which detail ME symptoms, post exertional malaise, activity levels, clinical needs and satisfaction with ME/CFS services. Together, these form the toolkit. They are sometimes referred to as Patient Reported Outcome Measures (or PROMs) but they do much more than merely measure outcome. They produce information to help you and clinicians better understand your difficulties and open up discussions about how to manage them. This then supports other aspects of care such as making a diagnosis or developing a care and support plan. They can also be used to track changes over time and produce summaries to share with others (e.g. family, other health or social care professionals or employers).

Prof Tyson’s work with other long-term disabling conditions has shown that using an assessment toolkit can streamline that assessment process. This improves understanding of patients’ problems, facilitates communication (between patient and professionals, and between professionals) and speeds up decision-making.

When you first see a health professional, there is an assessment process – that’s when there are lots of questions, tests etc, to gather the information needed to understand your difficulties. This is easier said than done when it comes to ME/CFS. Not only does ME/CFS cause a wide range of problems, but many are difficult to explain, especially when you are newly diagnosed with ME/CFS. Completing the toolkit makes that process easier. It also enables people with ME/CFS to complete the assessment process in their own time and pace, with confidence that nothing important has been missed. It also helps you think through the problems you are having and what you might want or need to do about it.

The use of PROMs is an established element of good quality care and clinical services are expected to use them. However, there are few PROMs for ME/CFS, so specialist services end up using ones designed for other conditions, or ones based on an ‘outdated’ understanding of ME/CFS. Consequently, they often miss out issues which are important to people with ME/CFS or ask questions which are not relevant. Also, some are poorly designed and do not produce good quality information. The aim of the MEA-CAT project was to fix that. The project has been led by – and co-produced with – people with ME/CFS and incorporated extensive feedback from thousands of people in the patient community. This truly is patient-led research. This has ensured the questions asked are important and relevant to people with ME, that the questionnaires produce robust information, and that they are as easy as possible to use.

Phase I of the project is complete and Phase II is in progress

The toolkit is now available to anyone who wishes to use it. It is available digitally via the apps (one for clinical services and one for the public). It is quicker and easier to complete the toolkit digitally as the scores are calculated automatically, but hard copies to download are also available to maximise access.

The second phase will:

Disseminate findings via peer-reviewed publications.
Expand the toolkit with three new resources (co-morbidities checklist, care and support plan template, and a version for children and young people).

Read Phase II update

Professor Sarah Tyson

Further information is found in the FAQs below, or if you have any questions, please contact Professor Tyson at sarah.tyson@Manchester.ac.uk

The MEA App

A publicly available app curated by the ME Association has now been launched with the digital Clinical Assessment Toolkit, including options to use with clinical services.

Features

Access the ME Association Clinical Assessment Toolkit to assess: Symptom burden using the TIMES, PEM using the PASS, Clinical needs using the CNAME, Patient experience using the PREM and Activities using the MEAQ.
Share clinical reports with clinicians, employers and relatives
Access support resources curated by the ME Association
Access reporting and future updates from £1.67 per month

This app is intended for:

People who are not already using our NHS-approved app with a clinician
People who want to access the ME Association Clinical Assessment Toolkit
Those unable to receive a referral to a specialist ME/CFS service
Clinics and Health Insurers, globally, that want to purchase a cost-effective licence for their patients

Benefits

Access the MEA app without needing a referral into a service
Complete the ME Association’s Clinical Assessment Toolkit
Keep a permanent digital record of your data on a personal device
Control who sees your data and share summary report

Contact:
autonom-e@elaros.com

More information:
autonom-e.com

Get the app

Download “autonom-e” from the app store / google play
Click ‘Create an account’
Register with the MEA-CAT
Complete the TIMES, PASS, CNAME, MEAQ, PREM-ME
Access MEA Resources
Share validated health reports with clinicians and colleagues

The Toolkit

There are four assessment tools available currently. You can also download a Word version of each form on the buttons below, to save and complete. Please check your downloads folder.

The Index of Symptoms (TIMES) to assess your ME/CFS symptoms

Download TIMES

There are also sub scales which assess more specific issues and which can also be used as standalone assessments. Downloads available on each listed item:

The Post Activity Symptom Scale (PASS) to assess post exertional malaise

Download PASS

The Clinical Needs Assessment for ME (CNAME) to measure clinical needs

i.e. what is important to you and you wish to address with the service

Download CNAME

The Patient Reported Experience Measure for ME (PREM-ME) to assess patient satisfaction

Download PREM-ME

FAQs

There is a small subscription charge (£2.99/ month) to obtain the summary reports for the toolkit. This is because there are costs to setting up and maintaining an app and it is fairest for these to be covered by the user. All the other features: access to the toolkit and the ME Association's resources are available for free.

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.

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.

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.

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.

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.

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.

These assessments are intended primarily for people who are attending a specialist ME/CFS service. We realise that access to specialist services is very limited, or non-existent in many parts of the country so there is an argument that they are not helpful for people in such areas. We decided to include them here, for completeness and for transparency so people can see what we have done and what has been produced. However, there may be situations when the assessments may be used with other health care professionals outside a specialist service. For example, the CNAME could be useful to clarify your thinking about what you want/need when discussing your care with your GP or social care professionals. We also expect that some specialist services (in the UK and overseas) will use the paper or electronic versions of the toolkit assessments that are available from the MEA website rather than the app, at least until they can gather the resources to buy a licence, so we wanted the assessments to be easily available.