Self-reported symptom burden in postural orthostatic tachycardia syndrome (POTS): A narrative review... 2022 Moss-Morris et al

Discussion in ''Conditions related to ME/CFS' news and research' started by Andy, Dec 18, 2022.

  1. Andy

    Andy Committee Member

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    Full title: Self-reported symptom burden in postural orthostatic tachycardia syndrome (POTS): A narrative review of observational and interventional studies

    Highlights
    • 5159 entries were screened; 29 eligible studies identified and narratively synthesized.
    • Serum activity against ADRA1 and a range of psychosocial factors were associated with symptom burden in POTS.
    • Orthostatic heart rate increase had no significant association with symptom burden.
    • No fully powered intervention studies to reduce symptom burden conducted to date.
    • Symptom burden measurement in POTS is inconsistent and a validated standardized instrument is needed.
    Abstract

    Background and objective
    Postural Orthostatic Tachycardia Syndrome (POTS) is a chronic health condition affecting mostly women of childbearing age, and significantly impacting their health and quality of life. It is currently poorly understood with no approved licensed treatments. The aim of this systematic review was to contextualize the symptom burden of POTS, and review factors associated with this burden that may guide future treatments. The specific questions were (1) How does symptom burden in POTS compare to the burden in other long term conditions (LTCs), (2) Which factors are associated with POTS symptom burden, and (3) Which interventions show promise in reducing symptom burden in POTS.

    Databases and data treatment

    Electronic databases (CENTRAL, MEDLINE, EMBASE, CINAHL, PsycINFO, Web of Science, APA PsycArticles, OpenGrey) were searched from inception to January 2022 for observational studies reporting on the association between any biological, psychological or social factors and symptom burden, and randomized controlled trials reporting on interventions for symptom burden in adults with POTS. Two reviewers independently conducted eligibility screening, data extraction and quality assessment. A narrative synthesis was undertaken.

    Results/Conclusion

    5159 entries were screened for eligibility. Twenty-nine studies were included (1372 participants with POTS of a total sample size of 2314, 17 High-, 12 Medium-quality), seventeen were observational and twelve were randomized controlled experimental and intervention trials. Overall methodological quality of the evidence was medium-high but heterogeneity was high and sample sizes modest, allowing moderately robust conclusions. Orthostatic symptom burden was higher in POTS than other LTCs. Serum activity against adrenergic α1 receptors, physical functioning, depression, catastrophizing, prolonged cognitive stress testing and anxiety were significantly associated with symptom burden in medium-high quality studies. Preliminary medium-high quality evidence from predominantly proof-of-concept (n = 11) studies and one 3-month 2 × 2 factorial design trial suggest that compression garments, propranolol, pyridostigmine, desmopressin, and bisoprolol may hold promise in reducing symptom burden. Directions for future research include investigating associated factors over time, the development of complex interventions which address both biological and psychosocial factors associated with symptom burden, and effectiveness trials of these interventions.

    Significance

    POTS symptom burden is high, particularly in relation to orthostatic intolerance when compared to other long-term conditions (LTCs). Despite this burden, there are no effectiveness randomized controlled trials of treatment to reduce symptoms in POTS. This review provides a starting point to understanding researched biological and psychosocial factors associated with this burden. There was however inconsistency in the measurement of symptom burden, lowering the confidence of cross-study inferences. A coherent definition of POTS symptom range, severity and impact along with a validated and reliable POTS-specific instrument is currently lacking. A standardized questionnaire to assess POTS symptom burden as a core outcome measure will help clarify future research and clinical practice.

    Open access, https://www.autonomicneuroscience.com/article/S1566-0702(22)00111-4/fulltext
     
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  2. duncan

    duncan Senior Member (Voting Rights)

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    Lot's of money in diagnostics or similar tools. I wonder if some questionnaires are patented or if the makers of the questionnaires receive royalties of a sort.

    What an evil mix. I have POTS and I almost feel assaulted after reading this. They slip in one or two words like catastrophizng and BAM! Judgement rendered. How do they get away with effectively maligning an entire patient community?
     
    Last edited: Dec 18, 2022
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  3. Trish

    Trish Moderator Staff Member

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    This seems to me to be an example of why I think the profession of Health psychology should be axed. Their whole reason for existence is to psychologise physical diseases/disorders.

    The fact that they can take any disorder producing physical symptoms and automatically start attributing it to catastrophising, anxiety etc and build an industry of psychological therapies based on this sort of research where they invent 'symptom burden' questionnaires is ridiculous, and a huge waste of NHS money.
     
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  4. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    It seems some mental health workers belief in the power of the mind over the physical knows no bounds.
     
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  5. rvallee

    rvallee Senior Member (Voting Rights)

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    A starting point. In 2022. After decades of this being known, denied and discriminated. After nearly 3 years of Long Covid has clearly proved this is an outcome of common mild infectious diseases. Imagine doing a review of evidence for an illness discriminated for decades as someone working in the discipline that caused the lack of research in the first place.

    A starting point. Right. Totally. This is as useless a paper as it ever gets. And no less, it's about an illness right in the middle of this person's field of expertise and clearly this is all unknown to her, the average patient is far more knowledgeable about it and that's without any help or support from professionals.

    As for narrative synthesis, I don't get it. Science is not about narratives, it's about facts. When all you do is narratives, you're not doing anything relevant.

    Fire this entire discipline. Give us the money they would get for a century and we'll actually do something useful with it for once. Absolute waste of everything.
     
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