“Understand your illness and your needs”: Assessment-informed patient education for people with multiple functional somatic syndromes, 2019, Pedersen

Andy

Retired committee member
Highlights
Multiple functional somatic syndromes (FSS) may be difficult to diagnose and treat.


We tested a short intervention across various FSS using a unifying diagnosis.


We used clinical assessment, group-based patient education and one consultation.


The intervention reduced illness worry and improved illness beliefs (IB).


Targeting IB in patient education across various FSS is feasible using a unifying term.



Abstract
Objectives
Patients suffering from multiple functional somatic syndromes (FSS) such as fibromyalgia, chronic fatigue syndrome, or irritable bowel syndrome, often lack both a clear diagnosis and tangible illness explanations, which is a barrier for treatment engagement. We tested a short-term intervention taking the unifying concept of Bodily Distress Syndrome (BDS) as a point of departure. The intervention consisted of a clinical assessment, group-based patient education, and one follow-up consultation.

Methods
174 patients were included and received questionnaires at baseline, after clinical assessment, after patient education, and median 19 weeks after baseline. Data were analyzed using random effects models and simple t-tests. Qualitative data were thematically analyzed.

Results
We found small reductions in symptom levels, considerable reductions in illness worry, and improvement of illness perceptions and illness-related behaviors. Overall, patients evaluated the intervention positively and expressed high expectations for further treatment. Qualitative results mainly supported these findings.

Conclusion
Targeting illness perceptions through patient education is crucial to obtain patient engagement in self-help management or further treatment. This may lead to improved outcomes.

Practical implications
Physicians in primary and secondary care should strive to give patients with multiple FSS a clear understanding that their various FSS diagnoses are related and provide tangible illness explanations.
Paywall, https://www.sciencedirect.com/science/article/pii/S0738399118307687
Sci Hub, https://sci-hub.se/10.1016/j.pec.2019.04.016
 
So patients are told they must not worry... and then the authors measure how much patients worry and declare the treatment a success when patients do in fact give responses on questionnaire that indicate less worry.

This is just an exercise in social control, isn't it?
 
This is just an exercise in social control, isn't it?
Well, to be fair, there's a bit of statistical bias as well.

The Symptom Check List – somatization subscale (SCL-som) which is part of the SCL-92 Revised [32] was used as primary outcome. It consists of 12 items about somatic symptoms experienced during the past 4 weeks and is scored on a 5-point scale ranging from 0 to 4 (total range score 0–48). To define treatment response, we used half a standard deviation, equaling -0.35 point indicating “moderate improvement”, which may be considered a clinically significant improvement [33].

However, since this was a very brief intervention with a short follow-up period, we did not expect large changes and therefore divided treatment response into another category“small improvement” equaling a quarter of a standard deviation.

Thus, the variable for treatment response was created by dividing the difference in primary outcome from baseline to endpoint into 4 categories: 1) Moderate improvement=lower than 0.35, 2), small improvement= between 0.35 and 0.14, 3), no change=between 0.14 and 0.35, and 4) deterioration= above 0.35.

So, the standard deviation on the 5-point Symptom scale was 0.7, and they talk about categories at the half-standard deviation and quarter-standard deviation points.

So that should be (-)0.35 and (-)0.175. But instead the "quarter" point is (-)0.14, making it even easier to make an improvement. So, if there is a decrease of 0.14 or more, it's an improvement. But there has to be an increase of 0.35 points to qualify as a deterioration.

(and of course the scale might not be linear, and the questions might be nonsensical - I don't know).

Looking at the proportion of patients who responded to the intervention according to our definition, 25.0% reported a moderate improvement, 17.9% reported a small improvement, 42.9% reported no change, and 14.3% reported deterioration.
Actually, if the same level of change is required for improvements and deteriorations, then the result is 25% reported an improvement, and 14% reported a deterioration, with 61% reporting no change.

And yet, this result is spun as almost half the patients responding.

A small decrease in somatic symptom levels was observed, and almost half of the patients reported small to moderate improvement. These positive findings on the primary outcome ....
 
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