Intensive Pain/Exercise Programs Are Not Beneficial For Most Pots Patients, 2024, Pederson & Wilson

mango

mango

Senior Member (Voting Rights)
Authors: Cathy L. Pederson, Rachel E. Wilson

Abstract
Intensive, hospital-based rehabilitation programs are recommended for many POTS patients.

Electronic surveys were taken by 1,130 POTS patients to assess the long-term effects of these programs, including a demographic questionnaire, the Malmö POTS Symptom Score (MAPS), Functional Assessment of Chronic Illness Therapy Fatigue Scale (FACIT), Gastrointestinal Symptom Rating Scale (GSRS), and Self-Management Assessment Scale (SMAS).

Only 80 (54.1%) POTS patients completed an entire rehabilitation program while 68 (45.9%) left early.

One-way ANOVAs revealed that POTS patients who began a rehabilitation program had significantly more diagnoses (p < 0.001), higher incidence of CFS/ME (p = 0.026), EDS (p = 0.002), MCAS (p < 0.001), and disability (p = 0.049), and higher scores on the MAPS (p = 0.043), GSRS (p = 0.039), and SMAS Knowledge (p < 0.001), Goals for Future (p = 0.002) and Daily Routines (p = 0.016) than those who never started.

Participants who left rehabilitation early had a significantly higher incidence of disability (p = 0.026) and scored significantly lower on SMAS Daily Routines (p = 0.004) and Emotional Adjustment (p = 0.001) domains than those who completed the program.

A significantly lower incidence of EDS (p = 0.005) was found in the 46.2% of participants that felt better after rehabilitation than those who stayed the same or felt worse. The remaining 53.8% of enrollees reported no benefit from these programs, with those who felt worse after starting rehabilitation having a significantly higher incidence of MCAS than those who stayed the same (p = 0.043).

Keywords: Postural orthostatic tachycardia syndrome (POTS), rehabilitation, pain program, exercise program

Article Citation: Cathy L. Pederson, Rachel E. Wilson, (2024 ) "Intensive Pain/Exercise Programs Are Not Beneficial For Most Pots Patients", International Journal of Management and Applied Science (IJMAS), pp. 67-73, Volume-10, Issue-3

https://ijmas.iraj.in/paper_detail....ams_Are_Not_Beneficial_For_Most_Pots_Patients
 
In rehabilitation, chronically ill patients are typically in therapy 8 hours per day for 3 weeks, utilizing stress management, biofeedback, relaxation training, and physical, occupational, and recreational therapy to learn how to better manage their symptoms [6]. In pediatric programs, parents are required to spend 20 hours per week learning the biopsychosocial model of pain and chronic illness [6] and receiving cognitive behavioral training [7].
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Rehabilitation clearly comes with a substantial cost to the participants (which include parents in the case of paediatric patients) and to the health system.

Preventing pain- related behaviors and decreasing both parent and patient focus on illness symptoms are key in these programs [7].
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We hypothesized that POTS patients completing these programs would report 1) feeling better; 2) a better self-management system for dealing with symptoms; and 3) less improvement in groups with more severe fatigue as measured by the FACIT or comorbid CFS/ME.
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From 1,130 surveys collected electronically via the Standing Up to POTS® webpage, 146 (12.9%) POTS patients reported starting an intensive, hospital-based POTS rehabilitation program (93.0% women, 3.6% men, 3.4% gender variant/non-conforming) and were included in this analysis.
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There's a couple of problems there. While it was valid to survey people who didn't start a hospital-based rehabilitation programme to allow a comparison of the characteristics of people who did and didn't do a programme, the abstract does not say that only 146 patients had started a programme. It would be easy for someone reading this in the abstract
Electronic surveys were taken by 1,130 POTS patients to assess the long-term effects of these programs
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to incorrectly assume that this study involved a large sample of people who started a rehabilitation programme.

The other problem is that the sample was a voluntary one, they say 'a community based sample'. All we can really say from this study is that there are people with POTS who don't find rehabilitation useful - we certainly can't draw the conclusion that the title of this paper suggests. Looking at the 'Standing up to POTS' website, it seems to be a patient support organisation, and it doesn't seem to be opposed to at least some of the content of the rehabilitation programmes. For example, under 'Exercising' it has this:

Standing up to POTS said:
Use a reward system. Consider using a visual means to see how much you exercise over time. Put a bead, marble or penny in a cup for every five minutes you exercise. It is encouraging to see them build up over time. For kids, these beads can be traded in for video games, articles of clothing, or whatever reward they want. They love it!
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The problems with this paper mean that it has limited use in advocacy. I think what this paper is useful for is suggesting that there may be problems with POTS rehabilitation that are worth investigating properly. There's a need to assess outcomes from POTS rehabilitation programmes in a systematic way.
 
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Use a reward system. Consider using a visual means to see how much you exercise over time. Put a bead, marble or penny in a cup for every five minutes you exercise. It is encouraging to see them build up over time. For kids, these beads can be traded in for video games, articles of clothing, or whatever reward they want. They love it!

Why does this make me think of dog training with treats? Is a clicker required too?
 
Arnie Pye said:
Use a reward system. Consider using a visual means to see how much you exercise over time. Put a bead, marble or penny in a cup for every five minutes you exercise. It is encouraging to see them build up over time. For kids, these beads can be traded in for video games, articles of clothing, or whatever reward they want. They love it!

Why does this make me think of dog training with treats? Is a clicker required too?
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They love it! Except when it becomes painfully obvious that they don't progress, in fact sometimes regress, and are then blamed for it.

Gamifying things is good for motivation, but the people who study motivation for a living cannot identify a problem of motivation, and so apply the wrong solution to a completely different problem precisely because they understand nothing of it. The fact that they obviously can never tell the difference doesn't seem to bother them one bit, they apply the mindless "can't hurt" dogma, even though it clearly does.

"Exorcists" also believed that they were successfully chasing away demons, people will believe in anything to justify that what they are doing is good. Professionals are never immune to this, and the 1:1 format and excessive secrecy model of health care makes it even more problematic, even worse with the lack of proper independent recording of what actually happened.

Earlier this year I started being able to do more, exercise a bit. At first I improved, then stalled, then got worse. It's all written down, with visual means and all. Not encouraging at all. In fact very discouraging. I do not love it one bit.
 
rvallee said:
They love it! Except when it becomes painfully obvious that they don't progress, in fact sometimes regress, and are then blamed for it.

Gamifying things is good for motivation, but the people who study motivation for a living cannot identify a problem of motivation, and so apply the wrong solution to a completely different problem precisely because they understand nothing of it. The fact that they obviously can never tell the difference doesn't seem to bother them one bit, they apply the mindless "can't hurt" dogma, even though it clearly does.

"Exorcists" also believed that they were successfully chasing away demons, people will believe in anything to justify that what they are doing is good. Professionals are never immune to this, and the 1:1 format and excessive secrecy model of health care makes it even more problematic, even worse with the lack of proper independent recording of what actually happened.

Earlier this year I started being able to do more, exercise a bit. At first I improved, then stalled, then got worse. It's all written down, with visual means and all. Not encouraging at all. In fact very discouraging. I do not love it one bit.
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Weird isn’t it.

I trained as a runner many years ago before I got ill. No one used beads or nonsense. It was pre mobiles so we wrote our times in a book every session. And plotted them as a graph

so it’s nonsense that these people don’t do this but instead get them to plot what they did. No trainer would do that. Only someone who doesn’t care about the outcome of fitness or health just their own what they get paid for.

and if someone’s times got worse (with more) they’d have been looking at reducing not ‘motivating’ because even in healthy people there was over training etc.
 
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