Establishing Clinically Relevant Severity Levels for the Central Sensitization Inventory, 2017, Neblett et al.

SNT Gatchaman

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Establishing Clinically Relevant Severity Levels for the Central Sensitization Inventory
Randy Neblett; Meredith M Hartzell; Tom G Mayer; Howard Cohen; Robert J Gatchel

OBJECTIVES
The aim of this study was to create and validate severity levels for the central sensitization inventory (CSI), a valid and reliable patient-reported outcome instrument designed to identify patients whose presenting symptoms may be related to a central sensitivity syndrome (CSS; eg, fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome), with a proposed common etiology of central sensitization (CS).

METHODS
Based on CSI score means and standard deviations from previously published subject samples, the following CSI severity levels were established: subclinical = 0 to 29; mild = 30 to 39; moderate = 40 to 49; severe = 50 to 59; and extreme = 60 to 100. The concurrent validity of the CSI severity levels was then confirmed in a separate chronic pain patient sample (58% with a CSS diagnosis and 42% without) by demonstrating associations between CSI scores and (1) the number of physician-diagnosed CSSs; (2) CSI score distributions in both CSS and non-CSS patient samples; (3) patient-reported history of CSSs; and (4) patient-reported psychosocial measures, which are known to be associated with CSSs.

RESULTS
Compared to the non-CSS patient subsample, the score distribution of the CSS patient subsample was skewed toward the higher severity ranges. CSI mean scores moved into higher severity levels as the number of individual CSS diagnoses increased. Patients who scored in the extreme CSI severity level were more likely to report previous diagnoses of fibromyalgia, chronic fatigue syndrome, temporomandibular joint disorder, tension/migraine headaches, and anxiety or panic attacks (P < 0.01). CSI severity levels were also associated with patient-reported depressive symptoms, perceived disability, sleep disturbance, and pain intensity (P ≤ 0.02).

CONCLUSION
This study provides support for these CSI severity levels as a guideline for healthcare providers and researchers in interpreting CSI scores and evaluating treatment responsiveness.

Web | DOI | PDF | Pain Practice | Paywall
 
Appendix S1. The Central Sensitization Inventory appears to be open access [link]

Ratings: Never | Rarely | Sometimes | Often | Always

1. I feel tired and unrefreshed when I wake from sleeping.
2. My muscles feel stiff and achy.
3. I have anxiety attacks.
4. I grind or clench my teeth.
5. I have problems with diarrhea and/or constipation.

6. I need help in performing my daily activities.
7. I am sensitive to bright lights.
8. I get tired very easily when I am physically active.
9. I feel pain all over my body.
10. I have headaches.

11. I feel discomfort in my bladder and/or burning when I urinate.
12. I do not sleep well.
13. I have difficulty concentrating.
14. I have skin problems such as dryness, itchiness, or rashes.
15. Stress makes my physical symptoms get worse.

16. I feel sad or depressed.
17. I have low energy.
18. I have muscle tension in my neck and shoulders.
19. I have pain in my jaw.
20. Certain smells, such as perfumes, make me feel dizzy and nauseated.

21. I have to urinate frequently.
22. My legs feel uncomfortable and restless when I am trying to go to sleep at night.
23. I have difficulty remembering things.
24. I suffered trauma as a child.
25. I have pain in my pelvic area.
 
Given Central Sensitivity Syndrome is only defined as how people with symptoms, that the researchers believe is due to hypothesised central sensitivity, answer questionnaires, until there is some independent measure of the hypothesised brain activity/functioning we are left with a totally circular definition and this study is no more than a scale of how unwell people report themselves to be.
 
Reasons for answering yes, off the top of my head:
Ratings: Never | Rarely | Sometimes | Often | Always

1. I feel tired and unrefreshed when I wake from sleeping.
Insomnia.
2. My muscles feel stiff and achy.
A physically demanding job, not moving enough on a daily basis.
3. I have anxiety attacks.
Anxiety.
4. I grind or clench my teeth.
This is normal. Ask any dentist.
5. I have problems with diarrhea and/or constipation.
This is normal.
6. I need help in performing my daily activities.
Being disabled.
7. I am sensitive to bright lights.
Migraines.
8. I get tired very easily when I am physically active.
MS, Parkinson, low fitness.
9. I feel pain all over my body.
Unknown.
10. I have headaches.
Poor sleep.
11. I feel discomfort in my bladder and/or burning when I urinate.
UTI
12. I do not sleep well.
Same as #1.
13. I have difficulty concentrating.
Sleep issues, anxiety, high stress environment, ADHD
14. I have skin problems such as dryness, itchiness, or rashes.
Climate, psoriasis
15. Stress makes my physical symptoms get worse.
Define stress?
16. I feel sad or depressed.
Depression. Grief. Loss. Rejection. Feeling sad is a normal feeling.
17. I have low energy.
This is normal.
18. I have muscle tension in my neck and shoulders.
This is normal. Posture. Desk job.
19. I have pain in my jaw.
This is normal. Ask any dentist.
20. Certain smells, such as perfumes, make me feel dizzy and nauseated.
This is normal.
21. I have to urinate frequently.
This is normal.
22. My legs feel uncomfortable and restless when I am trying to go to sleep at night.
Unknown.
23. I have difficulty remembering things.
This is normal, especially with covid brainfog.
24. I suffered trauma as a child.
Depending on how you define trauma, most will experience some as a child.
25. I have pain in my pelvic area.
This is normal.

———

I think it’s fair to say that this questionnaire was made to capture as many people as possible. It’s an attempt at grabbing territory and making themselves relevant.
 
Given Central Sensitivity Syndrome is only defined as how people with symptoms, that the researchers believe is due to hypothesised central sensitivity, answer questionnaires, until there is some independent measure of the hypothesised brain activity/functioning we are left with a totally circular definition and this study is no more than a scale of how unwell people report themselves to be.
This is the core reason I cannot take this stuff seriously. Its proponents are not offering any means to test construct validity, and causation, which are both required to confirm its existence. In fact they seem to deliberately avoid such testing.
 
Fascinating. And so generic. Circular reasoning never fails to amaze. You gotta love how absolutely none of this is in any way validated and bears no relation to any vague concept as they define it. It literally just asks about common symptoms in chronic illness. Exactly as useful as a werewolf questionnaire, there is zero context to the questions and every single question can be answered differently for entirely different reasons and no one would know or care.

You can tell it's central sensitization because of the way it is.

1769265368431.png
 
This is normal, especially with covid brainfog.

Depending on how you define trauma, most will experience some as a child.

This is normal.

———

I think it’s fair to say that this questionnaire was made to capture as many people as possible. It’s an attempt at grabbing territory and making themselves relevant.
Have a bunch of people actually thought about these kind of questionaires?
Their brainfog must be worse than mine.
 
This study provides support for these CSI severity levels as a guideline for healthcare providers and researchers in interpreting CSI scores and evaluating treatment responsiveness.
24. I suffered trauma as a child.

Gosh, that must be quite some treatment to improve the CSI score on item 24. It would seem to involve time travel.



What a hotchpotch of judgemental and harmful drivel. This is not science or medicine.

A woman with an undiagnosed chronic UTI (and so often chronic UTIs are undiagnosed) is going to score highly, thereby potentially allowing her doctor to continue to ignore her symptoms. Proper treatment of the UTI could change her status from having a central sensitisation syndrome to not. Does that mean antibiotics are a cure for central sensitisation?

I feel discomfort in my bladder and/or burning when I urinate.
I have to urinate frequently.
I have pain in my pelvic area.
 
Appendix S1. The Central Sensitization Inventory appears to be open access [link]

Ratings: Never | Rarely | Sometimes | Often | Always

1. I feel tired and unrefreshed when I wake from sleeping.
2. My muscles feel stiff and achy.
3. I have anxiety attacks.
4. I grind or clench my teeth.
5. I have problems with diarrhea and/or constipation.

6. I need help in performing my daily activities.
7. I am sensitive to bright lights.
8. I get tired very easily when I am physically active.
9. I feel pain all over my body.
10. I have headaches.

11. I feel discomfort in my bladder and/or burning when I urinate.
12. I do not sleep well.
13. I have difficulty concentrating.
14. I have skin problems such as dryness, itchiness, or rashes.
15. Stress makes my physical symptoms get worse.

16. I feel sad or depressed.
17. I have low energy.
18. I have muscle tension in my neck and shoulders.
19. I have pain in my jaw.
20. Certain smells, such as perfumes, make me feel dizzy and nauseated.

21. I have to urinate frequently.
22. My legs feel uncomfortable and restless when I am trying to go to sleep at night.
23. I have difficulty remembering things.
24. I suffered trauma as a child.
25. I have pain in my pelvic area.
That's quite a list of stuff.

How on earth does 24 get answered. Retrospective assessment of past trauma is hugely biased by current circumstances and feeling state so that'll be dramatically overestimated. And what has that to do with the pt populations they claim to be studying.
 
To the authors:

A key problem with your inventory is that you have assumed a cause for a disparate collection of symptoms and experiences (or in the case of the childhood trauma, presumably you have assumed that it is causal of the symptoms). You have done this without evidence.

A consequence is that people will be given a label that makes it harder for their medical issues to be taken seriously. It may result in them being denied investigations and treatments that would have resolved their symptoms. It is likely to result in them feeling disrespected and misunderstood and losing trust in medical professionals. It is likely to make it harder for them to get support, from government, from employers and from family and friends.

There are no evidenced effective treatments for the label that will be applied to people as a result of your inventory. So, your inventory causes substantial harm with no off-setting benefits for patients. For patients, it causes unmitigated harm.
 
To the authors:

A key problem with your inventory is that you have assumed a cause for a disparate collection of symptoms and experiences (or in the case of the childhood trauma, presumably that it is causal of the symptoms). You have done this without evidence.

A consequence is that people will be given a label that makes it harder for their medical issues to be taken seriously. It may result in them being denied investigations and treatments that would have resolved their symptoms. It is likely to result in them feeling disrespected and misunderstood and losing trust in medical professionals. It is likely to make it harder for them to get support, from government, from employers and from family and friends.

There are no evidenced effective treatments for the label that will be applied to people as a result of your inventory. So, your inventory causes substantial harm with no off-setting benefits for patients. For patients, it causes unmitigated harm.
Will they ever see this? @Hutan
 
Will they ever see this? @Hutan
I don't know.

A more realistic hope is that Systrom and his team see it though - that team used the Central Sensitisation Inventory in the recent study linked upthread. I suspect we have members who were in the study or who know the researchers. Perhaps they will alert the team to the thread and to the problems with legitimising this nonsense measure. I hope none of those researchers use the CSI again.
 
I don't know.

A more realistic hope is that Systrom and his team see it though - that team used the Central Sensitisation Inventory in the recent study linked upthread. I suspect we have members who were in the study or who know the researchers. Perhaps they will alert the team to the thread and to the problems with legitimising this nonsense measure. I hope none of those researchers use the CSI again.
Systrom and Novak becoming regressive on deconditioning too. Don't they read papers and comments from other authors anymore.

And what about the feelings of the patients?
One small step backwards for researchers, a giant leap backwards for patients.

I really hope you (and others) can jumpstart them into the right direction!!
 
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