One or many labels? a longitudinal qualitative study of patients’ journey to diagnosis at a specialist NHS (PoTS) clinic 2024 Moss-Morris et al

[Andy]

Full title: One or many labels? a longitudinal qualitative study of patients’ journey to diagnosis at a specialist NHS Postural Tachycardia Syndrome (PoTS) clinic

Abstract

Objectives
Postural Tachycardia Syndrome (PoTS) is a poorly understood syndrome of multiple disabling symptoms. This study explored the process of seeking a diagnosis of PoTS. Analysis focused on changes before and after participants’ first appointment with a national PoTS clinic, and explored whether a diagnosis is beneficial in the context of multiple co-occurring conditions and an absence of licenced treatments.

Design
A longitudinal, qualitative study.

Methods
Participants (n = 15) in this nested qualitative study were recruited from a larger study of people who had been newly referred to a National specialist NHS Cardiology PoTS service. Semi-structured interviews were conducted remotely before, and 6 months after their first appointment with the clinic. Data was analysed longitudinally and inductively using Reflexive Thematic Analysis.

Results
Three overarching themes were identified: “Slowly moving forward and finding positive gains”, “Needing more pieces of the puzzle to see the bigger picture”, and “The value and impact of investigations”. Findings suggested that not much had changed in the 6 months between interviews. Participants were moving forward in terms of diagnoses, treatment and adjustment following their appointment, but many were still seeking further clarity and possible diagnoses. Investigations, appointments, and new-found problems, continued to have a substantial impact over time.

Conclusions
The journey to diagnosis for patients with suspected PoTS appeared to promote acceptance of self, and of limitations posed by symptoms. However, many participants continued their search for an explanation for every symptom experience, and this may become increasingly complex, the more labels that have been acquired. Lack of clarity contributed to ongoing difficulties for this patient group alongside fraught relations with health care professionals (HCPs). A more coherent, integrated approach which is communicated clearly to patients is recommended.

Open access, https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0302723

 

[Nightsong]

Data analysis

The analysis was conducted through Relativist epistemology and Critical Realism ontology

Seriously?

It seems this particular POTS clinic follows the same treatment approach whether or not the HR criterion is met:

However, treatment approaches at this clinic would be similar for patients whether they received a diagnosis of OI or PoTS

And suggestions that for many of the participants the level of postural tachycardia was unrelated to symptom burden:

Interestingly, it was not always those who were most affected or disabled by their symptoms who met PoTS diagnostic HR criteria.

Others who were strongly affected by symptoms suggestive of PoTS, did not always meet
the diagnostic heart rate criteria. The uncertainty left them without an understanding of the
cause of their further declining health and decreasing independence, which they found diffi-
cult to explain, particularly at work

Also this paragraph jumped out at me:

I don’t travel very well at all. I don’t like hospitals anyway. But you feel exhausted for days
afterwards. . .I react to most things. . .I’m just not happy about being injected with some-
thing that could potentially make my heart go off the scale. . .(Participant N)

Not 100% sure but this may be isoprenaline, which is sometimes used when tilting patients with unexplained syncope but I wasn't aware was being used during a HUT to evaluate whether patients met the POTS criteria.

 

[MeSci]

Is there a difference between Postural Tachycardia Syndrome and Postural Orthostatic Tachycardia Syndrome?

Ah - just noticed at https://www.nhs.uk/conditions/postural-tachycardia-syndrome/

that "It's also known as postural orthostatic tachycardia syndrome."

 

[ukxmrv]

It could also be Nitroglycerin. I have had one TTT with that.

 

[Jonathan Edwards]

Seriously?

It's certainly the first time I have seen the blind inspecting the blind using Relativist epistemology and Critical Realism ontology. Maybe if you can't use bifocals that's all you can do?

 

[rvallee]

Only in medical research can you find people studying the subjects' subjective experience, only to end up injecting their own into everything, ultimately making it entirely about themselves. Completely narcissistic self-indulgence. But they do very well for themselves, and clearly it's all they can think about.

Like tobacco companies "researching" the potential harm of their product, and concluding that people just looooove smoking and that it "[insert corporate slogan here]". It doesn't pass the laugh test, but it's award-winning nonsense that doesn't pass the laugh test.

 

[Ken Turnbull]

Is there a difference between Postural Tachycardia Syndrome and Postural Orthostatic Tachycardia Syndrome?

Ah - just noticed at https://www.nhs.uk/conditions/postural-tachycardia-syndrome/

that "It's also known as postural orthostatic tachycardia syndrome."

Old sub-editor here:

"Postural orthostatic" could be considered a tautology because orthostasis (the state of being upright) is a type of posture. That is to say, if the tachycardia is orthostatic, then it's also postural.

Orthostatic seems to be more specific because postural could be referring to any posture.

At least, that's how I read it as a non-medical person.

However, one medical reference I looked at included the meaning of "a change in posture" in the term "postural", which does add some extra meaning.

Australia seems to have gone with POTS rather than following the Brits.

 

[Sid]

"Postural orthostatic" could be considered a tautology

Yep. It makes me cringe every time I see it spelled out. When people in real life ask me what POTS is, I always just say postural tachycardia syndrome because the other name is tautological.