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

Andy

Andy

Retired committee member
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
 
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.
 
The CSM also suggests that illness identity is the starting point for developing the illness representations, but some patients had already formulated other beliefs about the lack of controllability and chronicity of the symptoms even without the label. Indeed, it may be the lack of a label that enhances these more negative beliefs.

Furthermore, the interviews illustrate the distressing emotions generated from the symptom experiences as well as the frustrations of the diagnostic journey. Rather than the emotional representation occurring in parallel to cognitive representations as suggested by the CSM, they appear as interactive responses to these factors. There did not appear to be a separate coping response for emotions; the focus was more on managing the symptoms. This interaction is perhaps better represented by models such as the five-part cognitive behavioural model (Padesky, 2020; Padesky & Mooney, 1990), which broadly addresses the interplay between thoughts, behaviours, and mood but also encompasses physical reactions and situational factors. This model proposes to be helpful for collaboratively devising treatment plans with patients with a combination of difficulties.
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Iris Knoop appears to have POTS:
Finally, the primary researcher (IK) has prior knowledge and lived experience of POTS, and while it is never possible to fully limit personal influence upon interpretations (Hughes et al., 2020), measures were taken to counterbalance any potential bias (Tables 1 and 2).
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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.
 
dave30th said:
There are also Knoop's chocolate stores in Brighton and I assume elsewhere. Are they related??? :)
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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.
 
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