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Exploring the complexities of illness identity and symptom management in seeking a diagnostic label of (POTS) 2023 Iris Knoop, Moss-Morris et al

Discussion in ''Conditions related to ME/CFS' news and research' started by Andy, Oct 18, 2023.

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  1. Andy

    Andy Committee Member

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    Full title: Exploring the complexities of illness identity and symptom management in seeking a diagnostic label of postural orthostatic tachycardia syndrome (POTS): An inductive approach

    Objectives

    Postural orthostatic tachycardia syndrome (POTS) is a debilitating and under-recognized condition of the autonomic nervous system. This study applied Leventhal's Common-Sense Model of Illness Representations to explore the journey to a diagnosis of POTS and to understand its relevance to poorly understood conditions which have common comorbidities.

    Design
    An inductive qualitative approach was used to explore the processes by which patients formulate explanations and management of symptoms within the search for a diagnostic label and to investigate illness identity in the context of existing diagnoses or multimorbidity.

    Methods
    Participants (n = 29) for this nested qualitative study were recruited from a larger longitudinal study of people who had been newly referred to a specialist POTS service. Semi-structured interviews were conducted via video call. Three researchers coded and analysed data using Reflexive Thematic Analysis and elements of Grounded Theory.

    Results
    The analysis resulted in three overarching themes: ‘Seeking physiological coherence and validation’, ‘Individual persistence’, and ‘Navigating the cumulative burden’. ‘Accessibility and disparities of health care’ was noted as a contextual factor. Receiving a POTS diagnosis was regarded by participants as providing legitimacy and increased access to treatment. Overall, delays in the diagnostic journey and the lack of a clear diagnosis impacted negatively on patients through increased uncertainty and a lack of clear guidance on how to manage symptoms. Findings also suggested there were great complexities in assigning symptoms to labels in the context of multimorbidity.

    Conclusions
    Participants' stories highlighted the urgent need for better recognition of POTS so that the self-regulatory process can be initiated from the early stages of symptom detection.

    Open access, https://bpspsychub.onlinelibrary.wiley.com/doi/10.1111/bjhp.12700
     
    Andy, Oct 18, 2023
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  2. dave30th

    dave30th Senior Member (Voting Rights)

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    Gee, better recognition of POTS? Hasn't this crew already dismissed POTS as psychogenic related to the irrational fear of being upright? Or do Knoop and Moss-Morris disagree with the NYU neurologists who made that claim in a very stupid paper for which I organized a published response??

    https://pubmed.ncbi.nlm.nih.gov/36151957/
     
    dave30th, Oct 18, 2023
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  3. NelliePledge

    NelliePledge Moderator Staff Member

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    So what do they mean in the conclusion by the self regulatory process being initiated from the onset of symptoms. Changing perceptions??
     
    NelliePledge, Oct 18, 2023
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  4. Andy

    Andy Committee Member

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    Might be worth pointing out that this Knoop is Iris Knoop based at King's College London, not our old 'friend' Hans Knoop.
     
    Andy, Oct 18, 2023
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  5. Trish

    Trish Moderator Staff Member

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    Iris Knoop is a PhD student at King's and this is her research project, presumably in the Health Psychology department under Moss Morris supervision.
     
    Trish, Oct 18, 2023
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  6. Trish

    Trish Moderator Staff Member

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    My conclusion from reading this is that we don't need health psychologists to sort out the problems people with POTS are experiencing, we need accessible functioning diagnostic services and well trained GP's to recognise the symptoms and refer patients to the experts for diagnosis and to get treatment and management sorted out.

    Perhaps it might have been more effective if they had studied the doctors knowledge and attitudes, and the shortcomings in the NHS.
     
    Trish, Oct 18, 2023
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  7. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    What is illness identity? I don't think I have one. Should I try Tesco?
     
    Arnie Pye, Oct 18, 2023
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  8. Sean

    Sean Moderator Staff Member

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    As is tradition, the problem is always with the patients' perceptions and beliefs, never with the researcher/clincian.
     
    Sean, Oct 19, 2023
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  9. Hutan

    Hutan Moderator Staff Member

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    Iris Knoop appears to have POTS:
    Yes, I think Trish's response to this is spot on. Most of the paper is fine and even sensible, which is interesting given Moss-Morris's supervision. But was it necessary? Probably not.

    Is it all part of knowing the issues better so that roles for psychologists may be found?
    Is it part of the disappearance of ME/CFS? Diagnoses of POTS fulfil the identified patient need for a diagnosis and then allow behavioural interventions such as GET and CBT to be applied. We have seen that happen with Julia Newton who seems to have withdrawn from CFS work, and more recently has been operating a fatigue clinic with an emphasis on POTS, and with graded exercise therapy used as a treatment.
     
    Hutan, Oct 19, 2023
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  10. dave30th

    dave30th Senior Member (Voting Rights)

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    There are also Knoop's chocolate stores in Brighton and I assume elsewhere. Are they related??? :)
     
    dave30th, Oct 19, 2023
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  11. Andy

    Andy Committee Member

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    Well, inspired by the typical quality of logical thought from Hans, as they have the same surname then I think that they must be. If only Hans had stayed in the family chocolate business, instead of dedicating his life to making up stuff about chronically ill people, he could have actually brought some joy into this world.
     
    Andy, Oct 19, 2023
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  12. CRG

    CRG Senior Member (Voting Rights)

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    CRG, Oct 19, 2023
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