UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

Returning to the recent MEA article about this project, a couple of comments:

It opens with:

We have a thread discussing that study here:
Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population, 2024, Gladwell
I'm not going to start up discussion of that study here that's best done on that thread. What I want to draw attention to is the conclusion that the MEA seems to have accepted without question, that because one commonly used PROM is not fit for purpose, that means we need new ones. That does not logically follow.

It could equally follow that we need methods other than PROMs for clinical and research use. In fact that is what we have been arguing throughout this discussion, and it's falling on deaf ears.

Also, they are admitting here that the PROMs produced in this project are intended for 'clinical and research use'. Sarah Tyson has insisted throughout our discussions that the PROMs they are developing are for clnical use, not for research use. They really need to get their story straight on this.

The second part I want to raise as a concern is the quotes from patients that Sarah Tyson uses in this article to justify the usefulness of their new PROMs.
All the comments quoted have a similar slant - that the questionnnaires have helped the individuals learn more about the symptoms of ME/CFS and how it affects their daily lives.

This does not justify information about ME/CFS being conveyed to pwME via PROMs. If clinics are doing their job, they should be providing information about ME/CFS to patients, and the MEA itself has information in various forms that covers all the sorts of thing being raised in the comments.

I would say a PROM is a very poor way to convey basic information about ME/CFS such as lists of possible symptoms and what sorts of exertion may trigger PEM. Patients need that sort of information at the start of their diagnostic and management journey in a form they can take home and refer to, and if they want to, to track daily so they learn their own patterns.

Filling in a questionnaire once a year, or however often pwME are reviewed, may help focus what they want to discuss in the review, but if done from memory will not give a valid overview that can be turned into a numerical score with any meaning.

 

Confusing, isn't it. They are both part of this project.

TIMES is the symptoms one that was run in November 2023. We don't seem to have had much discussion about it:
https://www.s4me.info/threads/‘the-index-of-me-symptoms-times-’-developing-a-clinical-assessment-toolkit-for-me-cfs.36345/

PASS was the second one that we have discussed a lot more, as it was supposed to be about PEM, but muddles together all 'symptoms after exertion'. This is the one our members have heavily criticised.
https://www.s4me.info/threads/uk-me...ialist-services-2023.33221/page-9#post-515595

 

The project funded by the MEA and led by Tyson and Gladwell is creating several PROMs. The first two are TIMES and PASS. This is the project Sarah Tyson wrote about in the latest MEA article, and quoted from pwME who filled in the two questionnaires (PROMs)

The separate Gladwell study referred to at the beginning of the recent MEA article is not part of the MEA funded study. It is referred to in the article I think in order to try to justify the MEA funding the study.

 

I've been exploring some of the current BACME guides, all of which have been updated or written since NICE 2021. Of particular relevance to this project:

The BACME ME/CFS Care and Support Plan Guidance, December 2022
https://bacme.info/wp-content/uploads/2022/12/BACME-Care-and-Support-Plan-Guidance-Dec22.pdf

This includes template care plans for adults and for children. I have only looked at the adult one on pages 14 to 22

It is recommended that the care plan be accessed online by both clinicians and patient in advance of consultations and reviews so the patient can fill in in advance.

Sections include:

name and interests

family and carers

medical history

symptoms: A detailed section on a large and detailed range of symptoms, including PEM, each with yes/no, scale 1 to 10 for how much it affected you over the last month, and tick box for whether the symptom affects level of activity.

boxes for the pwME to list things that make their symptoms better and worse in their own words,

a list of activities of daily living and mobility, with boxes beside each for the pwME to write in 'help in need and now often' for each.

Then there are boxes that the pwME can fill in headed:
My health and well-being goals and aspirations
My information needs - What would you like to know and how would you like to receive information to support you.
Actions agreed with my healthcare practitioner (Option to Include a Wellness Recovery Action Plan example from North Staffordshire Combined Healthcare NHS Trust)
Managing flare ups or setbacks (Specific actions to take when I experience worsening of my symptoms)
______________

My comment:

As far as I can see this is a suitable way of collecting all the information that this MEA project is designing PROMs for, but is specifically designed purely for assisting pwME and clinician to communicate in a way accessible to both online so it can provide a ready summary of information that should help focus the consultation. It has the big advantage over the PROMs being designed in this project that it is openly available at any time online for both patient and clinician to fill in, and does not attempt to serve the dual purpose of service evaluation or to provide any statistics.

I see no reason that makes sense to me for the MEA to have funded an alternative, and from what I've seen so far, inferior version of information gathering in the form of PROMs. for what is already available from BACME. Why would the MEA spend £90,000 reinventing the wheel, if, as they claim, the main purpose is to help in clinical care.
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Perhaps the answer comes in the second BACME document I've looked at:

BACME severe ME/CFS guide it says on pages 42 to 43:
https://bacme.info/wp-content/uploads/2023/11/BACME-Severely-Affected-Shared-Practice-Guide.pdf

Quote:

Section 6: Outcome measures

6.1 Why use outcome measures?
• As a therapeutic tool, to allow therapist and patient to track and reflect back on any improvements in the individual’s recovery process
• To evaluate the benefits of service input, for example, to produce data to feed back to commissioners
• To generate health economic data to inform decision makers within the NHS
• To provide evidence to funders

It is important to recognise that completing questionnaires can take a lot of mental effort for a patient who might be only able to tolerate a few minutes conversation at one time or who may have 'brain fog' which makes reading and writing difficult. Nevertheless, for the reasons given above, we suggest that all services should consider incorporating basic outcome measures into their work with severely affected patients wherever possible.

Outcomes may be recorded by patients themselves (Patient reported outcome measure - PROM) or by Clinicians (Clinician reported outcome measure - CROM), though the latter can be carried out with the patient.

6.2 PROM (Patient reported outcome measure)

The BACME 2023 National Services Survey shows that there is a wide range of outcome measures being used in specialist services. Many services continued using tools included in the National Outcomes Database established in 2006, despite this central collection of data no longer being operational.

Commonly used measures include:

SF36 Chalder Fatigue Scale
Pain severity measure
Clinical Global Impression Scale (CGI)
Hospital Anxiety and Depression Scale (HADS)
pHQ9 Depression Questionnaire
EQ5D 5L Self-efficacy measure

BACME is involved in a project which is seeking to develop ME/CFS specific outcome measures which will allow for improved standardisation across services.

My bolding. End of quote
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The MEA announcement of this project quotes Sarah Tyson:
https://meassociation.org.uk/2023/0...nt-toolkit-in-nhs-me-cfs-specialist-services/
ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services
May 8, 2023

“I am delighted to have received this grant from the ME Association and look forward to working with the team, with people with ME/CFS, and with clinicians to co-produce a clinical assessment toolkit.

“The tools will promote patient-centred care by helping people with the condition and healthcare professionals identify needs and concerns, plan support together, monitor progress and outcomes through NHS ME/CFS specialist services.”
___________________________

I hope someone from the MEA can clarify this, because I think we've been misled.

 

The wellness recovery plan thing is in brackets as an optional extra, I assume for those who are asking for help with psychological symptoms. It's not part of the care plan.

My point is that the care plan document already exists to cover everything this project is covering, so why reinvent the wheel, if the intention is to help with care.