University of York, UK - STIMULATE-ICP - Online questionnaire based study about Integrated Care Pathways for chronic illnesses

rvallee

rvallee

Senior Member (Voting Rights)
Copied from the Long Covid thread

This BPS-focused questionnaire is open to everyone with a long-term chronic illness. Its explicit aim is to build support for a BPS approach to LC. You know what to do: answer honestly. It's short, about 5-10 minutes.

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https://york.qualtrics.com/jfe/form/SV_eaPn3BgzBTrtEk6

STIMULATE-ICP (Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways) Delphi Project

You are invited to take part in a research study. Before you decide whether or not to take part, it is important to understand what the study is about and what it will involve. Please read this information and if you have any questions, please contact the person named at the end. Your participation is important to us but is entirely voluntary.
Background

As we learn more about COVID-19 and are better able to support people, it has become clear that many people experience long term symptoms relating to a COVID-19 infection (Long COVID). This is a challenge for healthcare. Traditionally, care pathways for long-term conditions are focused on single diseases; however, that approach is not effective at supporting people with more than one long-term condition or those with medically not yet explained symptoms. Long COVID usually presents with clusters of symptoms, which may change over time. Therefore, healthcare services have to take a broader approach to care focusing on more than one system (biological, psychological and social which together are called a biopsychosocial approach). This is called an integrated care pathway. Integrated care means more than patient-centred care which can be provided in one setting, integrated care involves the whole pathway from primary care to specialist services and rehabilitation services.
In the UK, integrated care pathways offer an opportunity to explore the benefits of an integrated approach to care for long COVID, long-term conditions and multiple long-term conditions. This Delphi study refers to the approaches for considering transferability of present long COVID integrated care pathway care models to other long-term conditions.
This study seeks to answer the broad research question: What are effective integrated care pathways for individuals with long COVID and how can they be transferred to other long-term conditions including mental health problems, multple long-term conditions and the interface between known medical disorders and medically not yet explained symptoms as well as newly developed conditions?
This Delphi study using a biopsychosocial approach, will investigate:
1. (a) Key enabling elements for effective integrated care pathways for individuals with long COVID, based on user experience, and (b) Strengths of existing integrated care pathways for other long-term conditions.
2. Which (part of an) integrated care pathway model for long COVID can be transferred to other long-term conditions for which care pathways were not yet developed sufficiently, and how.
3. Variations in uptake and adherence to treatment in long COVID and long-term conditions.


Who is doing the study?
This study is being led by Prof. Christina Van Der Feltz-Cornelis, Department of Health Sciences, University of York, UK. The study is part of the STIMULATE-ICP research (https://www.stimulate-icp.org/) and is funded by the National Institute of Health Research (NIHR), UK.
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From the survey
Who is doing the study?
This study is being led by Prof. Christina Van Der Feltz-Cornelis, Department of Health Sciences, University of York, UK.
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Threads we have on the work of Prof Van Der Feltz-Cornelis (you may spot a theme that emerges)
IL-6 and hsCRP in Somatic Symptom Disorders and related disorders, 2021, van der Feltz-Cornelis et al
Assessment of cytokines, microRNA and patient related outcome measures in conversion disorder/[FND], 2021, van der Feltz-Cornelis et al
Priority Setting Partnership: Medically Not Yet Explained Symptoms
Misdiagnosis of an underlying medical condition as Conversion Disorder/Functional Neurological Disorder (CD/FND), 2020, van der Feltz-Cornelis et al
Childhood sexual abuse predicts treatment outcome in conversion disorder/functional neurological disorder, 2020, Van der Feltz-Cornelis et al
A European Research Agenda for Somatic Symptom Disorders, Bodily Distress Disorders, and Functional Disorders, 2018, van der Feltz-Cornelis et al
 
I have just done this survey. I think it's well worth adding our input.

I emphasised that ME/CFS is a physical illness, and therefore psychological therapies are not necessary or appropriate unless the person has comorbid mental illness and is well enough to cope with therapy.

I also emphasised that I think the team should consist of a medical consultant, not a psychiatrist, and the rest of the team should be specialist nurses, as they can help with all aspects including activity and symptom management and monitoring, symptomatic drug treatments, help with arranging for care needs, and give psychological support and do home visits. I emphasised that people with energy limiting conditions need one person who can cover all of this, and that needs to be a specialist nurse. I listed the limited role OT's, physios and counsellors could have for some patients.
 
They also ask people if they would be prepared to do a follow up discussion. Will be interesting to see given my responses whether they take me up.


“Interesting” that the only questions they ask about what your experience over the last 2 weeks has been are about mental health, the usual stuff about motivation.

I also put PEM as most troubling symptom
 
So what on earth are they going to do with the fact that I said I was unhappy or depressed several days this week - which I was, because of having Covid, coming back from holiday and reading the news.

It reminds me of those automatic telephone conversations when it says 'I didn't quite catch that, did you mean to say 'underwear department'?
 
Therefore, healthcare services have to take a broader approach to care focusing on more than one system (biological, psychological and social which together are called a biopsychosocial approach)
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How can they "have to take" an approach that is already the standard that failed Long Covid to begin with? It's literally because of a BPS approach that medicine has nothing but a BPS approach to offer to Long Covid. It's what's failed since the beginning.

And the solution is to "take a BPS approach" since the BPS approach doesn't work simply because people pretend this isn't already the case? Even as they boast that it's already good because it's BPS? What incredible circular nonsense. It's like reality has no bearing on anything. It's not even fair to use the usual joke about the inmates running the asylum since this is the rare case where it's actually mostly true.
 
First off, it appears they are dismissing biomedical care for people with more than one physical illness. Or, they are promoting adding psych care to bio care for people with more than one disease.

Why would an integrated approach (ie. psych + bio) be needed for as an example, a person with asthma and hypothyroidism? Are we now to understand that if someone has more than one disease, there is something wrong with their thinking or beliefs?

Back to reading their info...

ETA: not dismissing biomedical care for more than one long term illness, but saying it's not effective as just one arm of care. Proof?

I've had counseling re ME - no help. Biomedical care didn't hit the mark either except as an exclusion measure - what I don't have.

Testing was not, (of course) geared to ME. Nor was it geared to neurological and cognitive problems I listed. For example no brain MRI, or memory testing etc.

Post Canadian Consensus Criteria publication in 2003, I pursued proof listed in the CCC Overview. And, evidence did show up.
 
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