What do people think of SF-36?

Very much agree @Trish

One of the problems with assessments of pwME is that unreliability of function and PEM are not taken into account. Can the pwME repeat a particular activity today, in an hour, or tomorrow. Physical exertion and performance of activities is often sporadic and unreliable.

Even the pwME themselves cannot solidly predict what they will be able to do at any given time.

I agree @rvallee

The answers on the SF-36 may be interpreted and weighted according to bias. One could easily interpret the answers as indicating depression, when there is a physiological dysfunction.

This questionnaire does get at some areas of concern, but it's not in-depth enough for pwME.

ETA: further to what @TigerLilea said, a questionnaire looking at the last 4 weeks of one's life with ME is rather laughable.

First there is the 6 months duration of symptoms required as one check mark in an ME diagnosis, and second, we know it often takes years of ill health for someone to receive this diagnosis.

 

This!

 

Were just asked about 'SF36'.

 

I keep wondering what it is we should really be trying to do with these questionnaires and whether they really provide useful documentation over and above 'are you better' or actually hide that real answer.

I can see that if you are testing someone every few months to see if there is a consistent change in function that it might be good to document specific functions - like climbing stairs or walking a mile or sitting up in bed. But patients complain that these questions may obscure more important realities and I can see how that might be so.

What about the idea of having a list of activities ('function measures') that you fill in each time in terms of grade of difficulty as in @RedFox's post #7. You don't drive some pseudo arithmetic score from that though, instead you ask for the patient's assessment of their global function in comparison to baseline informed by seeing their answers over time. In other words rather than some health care professional making up some score based on the answers, the patient is able to give what they themselves think it all adds up to?

Either you elieve patients are you don't. If you are using a subjective scoring system like this (for a blinded trial) then what matters is what the patient really thinks their status is.

 

I'm one who gets viral reactivations (EBV or HHV6 or whatever) every 2-3 years that can increase my level of disability substantially for months.

I feel these questionnaires do not understand chronic illnesses.

 

It is an important day-to-day issue.

As we know, this unpredictability wreaks havoc with schedules, relationships, and basic activities of living, such as self-care.

Many pwME cannot guarantee without a doubt they can do such and such on any given day.

 

Agreed. I think these questionnaires are developed from the assumption, whether acknowledged or not, of short term illness.

If we were to graph the progression of ME, it's certainly not linear, nor "up, up and away", as I think others view what should be the trajectory to our recovery.

 

@Jonathan Edwards


Page 15 of the Canadian Consensus Criteria Overview has a Symptom Severity and Severity Hierarchy Profile checklist for patients.

This gives the patients the opportunity to indicate what their symptoms are and how they're doing.

On examination, it can be difficult to use this chart to rank severity, as ME is fluid as regards exacerbations, and waxing and waning of symptoms, however it's much more applicable to ME, than some other questionnaires:

https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf

 

I don’t like the SF36 as Is more for a general “healthy” population for the reasons stated by others, rather than specific for ME…..

I am registered with the You + Me patient registry for ME/CFS trials in Australia. https://youandmeregistry.com/
A comprehensive medical and treatment history is required but it is a secure site run out of La Trobe University, Melbourne.

They use the De Paul symptom questionnaire (DSQ-2) - Info from site on the DSQ-2 if not familiar with it.

“The DePaul Symptom Questionnaire-2 assesses key symptoms of ME/CFS such as fatigue, post-exertional malaise, sleep, pain, neurological/cognitive impairments alongside autonomic, neuroendocrine and immune symptoms.

The full questionnaire includes (79) items :

Section 1 : The DePaul Symptom Questionnaire - Short Form

• (22) paired items

Section 2 : The DePaul Symptom Questionnaire - Long Form

• (57) paired items

Please note that this part of the survey is completely optional + does not need to be completed in one sitting!

*The DePaul Symptom Questionnaire-2, also known as the DSQ-2, assesses key symptoms of ME/CFS, including PEM. The questionnaire was developed and validated by Prof. Leonard Jason and the Chronic Fatigue Syndrome Project at DePaul University, Chicago, Illinois, US”

(There is also an app for tracking M.E. symptoms and they monitor key ones (for their research and selection of study participants) but pwME can also use it to track symptoms and treatment and own health goals/function score, very easy to use with sliders for quick input and graphs for checking trends. It is also associated with to the UK Biobank.)

 

This is an inherent problem with questionnaires that don't use individual-level data. You can have the same problems about political polls, say asking people whether they think the country is going in the right direction, it tells you nothing about why and among those answers are fully mutually exclusive reasons. Some people may think it's going in the wrong direction because society would be so much better if we were ruled by a brutal dictator, while others respond based strictly on their personal well-being or financial success. Questionnaires produce very superficial data.

How questionnaires are used is also important, it's not just the questions but how they're used. In addition to the single point in time issue with dynamic systems. You can't really fix that by tweaking a questionnaire or choosing a better one, and fixing those flaws actually conflicts with the main problem with using those questionnaires: bias. Most of the studies using a specific questionnaire make a choice to have a specific answer they want. They only look at what they're looking for. That's not research, that's barely better than trawling your own notes to get new insights.

Frankly I've rarely seen anything as biased as this so-called evidence-based medicine. It affects everything downstream far more than the choice of questionnaires, because it's mostly what goes into deciding what questionnaires get used in the first place, and how they're meant to be analyzed to validate a desired outcome. When BPS studies go on about "catastrophizing" and other ridiculous concepts like this, they fail in ways that nothing can fix.

In engineering we assume things will fail. In medicine it seems they assume anything they do must be good. You can't fix that with tweaks, this is a systemic failure that ruins everything.

 

Ah, yes—now I've had chance to look, I have been screened using this. The rheumatologist got to the third hilariously inappropriate question to ask a wheelchair user, screwed it up, and lobbed it expertly into a bin eight feet away. I got the feeling she'd done it before.

As it makes no attempt to be inclusive of any type of impairment, whether or not it impacts overall health and function, I'd say it's unsuitable for any patient population.

And for ME patients, surely there has to be a way to acknowledge the reality that every activity is contingent on what else we've had to do recently, or still need to do in the near future.

If you're monitoring function over time, perhaps there needs to be a core list of—say—10 to 15 things individuals need to accomplish most weeks in order to keep their lives running at a basic level, without recruiting additional help or having to go without something important like buying food or showering. This would vary according to severity, living situation, and individual needs; for instance, it wouldn't bother me at all if I don't have the energy for good chat with a friend for a couple of weeks, but it might be detrimental to the wellbeing of another person.

And then perhaps a list of non-obligatory things people would choose to do if they were able, some more challenging than others. This might reveal whether there is energy and function to spare, and how much of it.

Would something like that make sense, or would the necessary individualisation just cloud the issue?

ETA: there might have to be a category for mishaps as well, as something relatively minor for a well person can throw us off course for weeks by causing a huge dose of PEM.

 

Why is a questionnaire even necessary? I've had ME for 32 years now and in all the years that I've seen different doctors here in British Columbia, Canada, I've never once been asked to fill in a questionnaire.

 

No, I haven't for ME, but then again nobody has needed to monitor my long-term response to a treatment in a trial, because there haven't been any.

It's the issue of how to record whether people have got better, stayed the same, or got worse as a result of receiving a treatment or placebo, in a way that will be viewed as scientifically respectable.

It might be that a completely different approach would be much better than a questionnaire, but I imagine one eye always has to be kept on what is expected by funders, other researchers, journal publishers, and doctors when an exercise is described as a clinical trial. Given the particular history of ME research, it has to meet standards and be recognised as having done so, at least by people who matter.

 

We just assume that questionnaires are measuring the intended things but it's not difficult to see that patients often do not have an accurate picture of their own level of disability.

This distortion can be wishful thinking. Chronic illness is scary and we don't want to face reality. This is presumably also why the BPS approach was able to get as far as it did, by promising simple solutions.

It can be habituation. We always feel crap, and eventually we become used to it and our norm. We're still aware that things are not normal but we might be poor at rating accurately just how far from normal things are.

It can be lack of experience. I don't how much I'm limited in doing many activities because many I haven't even tried in a long time. If asked to rate my limitation, I might just quickly make a guess while skipping the uncomfortable thought in the back of my mind that I'm not actually sure. But I can make a guess. I have no idea how limited I am in walking two blocks because I don't know how large city blocks are, or even how much I typically walk without difficulty (I don't measure this, so how would I know?).

Patients who are able to live within the limits of their illness (read: financial support, maybe help with household, no major pressures or obligations that conflict with pacing) might be pretty good at doing mostly things they can tolerate, giving a false sense that things aren't so bad.

It could be a lack of appropriate reference point. It's easy to believe things aren't bad if your reference point for normal activities are your aging parents, and you don't get out of the house much, and if you do, don't spend much time with others. If you lived with other people of the same age, I suspect the impairments would be more obvious.

To get a sense of reality, one would have to use some standardized test of actual ability adjusted for age and gender, rather than asking patients. Or daily steps per day with precautions to avoid noise from patients wanting to look good or bad on their daily step counts and changing their behaviour until they lose the motivation to do so.

Is it really too inconvenient to use something like a hand grip strength test?

 

But I guess you weren't participating in a trial.
What I may have taken for granted is that the issue is the value of SF36 as a trial endpoint.
I cannot imagine anyone wanting to use it in routine practice (although no doubt there will be some...)

 

But this is part of my problem with the SF-36. It compares people to "normal", even if they don't have anything like normal function.

So is the purpose to show how disabled we are, compared to others; or is it to measure what happens to the function we have—however low or high it is at entry into a study—after the treatment, and for some time after that? I thought it was the latter, hence my suggestion of an individualised baseline that gives a broad picture of that person's capacity to conduct basic living activities, with whatever assistance or support they usually have (or don't have).

I guess it doesn't matter which, as long as we know what the underlying purpose is.