Financial Outcome Measure

[hibiscuswahine]

@bobbler, thank you for that information. Oh golly what a grim misuse of health data to save money. Yes this pilot study may have been picked up by the UK NHS, not sure how you would verify that but yes this mirrors the insidious creep I have observed in the health news in NZ.

Yes, it is possible frequent attendees they are describing may get referred to CL psychiatry. Whether the referral was accepted and an assessment done (it would have to be during normal working hours as CL is not an on-call acute service) is another matter. I can't speak for CL but often community psychiatrists had to give opinions on some people they described. Often there was little we could do as their symptoms were part of their medical disorder, eg anxiety with being breathless in COPD. It was actually the ambulance service wanting a management plan. CBT was not going to fix that. Often there is no psychiatric medication that could be used as it would exacerbate their medical illness. Usually we tried to get more community medical care for them and explained this to the medical team.

 

[bobbler]

@bobbler, thank you for that information. Oh golly what a grim misuse of health data to save money. Yes this pilot study may have been picked up by the UK NHS, not sure how you would verify that but yes this mirrors the insidious creep I have observed in the health news in NZ.

Yes, it is possible frequent attendees they are describing may get referred to CL psychiatry. Whether the referral was accepted and an assessment done (it would have to be during normal working hours as CL is not an on-call acute service) is another matter. I can't speak for CL but often community psychiatrists had to give opinions on some people they described. Often there was little we could do as their symptoms were part of their medical disorder, eg anxiety with being breathless in COPD. It was actually the ambulance service wanting a management plan. CBT was not going to fix that. Often there is no psychiatric medication that could be used as it would exacerbate their medical illness. Usually we tried to get more community medical care for them and explained this to the medical team.

This might need to be moved as I don't know whether this later part is getting off-track from the original thread, BUT I guess it is still about resource-saving initiatives, and importantly that study with the tiny sample is the reference that puts MUS as a whole section in this next one which seems to be a national initiative.

OK this one I spotted as I saw reference to a CQUIN in the following (Exeter): Royal_Devon_and_Exeter_NHS_Foundation_Trust_Annual_Report_and_Accounts_2017-18.pdf (england.nhs.uk) it just so happened to be on p36-37 and was the section before CFS was mentioned (p37) for something else. But it caught my eye because it was about an initiative for frequent attenders.

I've looked up the CQUIN that seems to be behind this: Frequent_Attenders_in_the_ED_Aug2017.pdf (rcem.ac.uk)

this doc is from the royal college of emergency medicine.

You'll note the following on page 3:

The population of patients who are frequent attenders is heterogenous. A UK ED study showed that 65% had Mental Health symptoms, 15% had significant alcohol problems, and 45% had Medically Unexplained symptoms.

vi Those with chronic mental health problems combined with social problems and alcohol tend to make up the very high frequency patients.

Many frequent attenders are vulnerable and locally agreed processes should be followed. When reviewing frequent attenders always screen for drug and alcohol use, safeguarding issues, and domestic abuse concerns

I might be wrong and haven't read this through, or indeed the actual implementation which would be local, but could see how if eg MUS is flagged as likely cause of frequent attenders, how this could become a way in which 'MUS' (rather than the frequency banging them over the head) became something people looked up and then were on the lookout for.

Plans for patients with Medically Unexplained Symptoms have not been shown to reduce attendances but may reduce investigation and admissions for patients and can provide a consistent approach.

The evidence for care plans reducing ED attendances is lacking - case series tend to show good resultsxi , xii but studies with a control group showed no difference between groupsxiii .

xiv Plans should however improve safety if used well and may perhaps reduce overall resources used such as investigations and referral to specialty.

Page 6 is worth scrolling to as it is all about MUS and psychological therapies:

Patients who attend with Medically Unexplained Symptoms make up quite a large part of the Frequent Attender Population. ................. Junior clinicians however seeing these patients are more likely to request more tests and make referrals to make sure they do not miss a treatable condition. This approach is likely to encourage the patient to seek more tests and diagnoses.

It is helpful if these patients are identified as patients with Medically Unexplained Symptoms and clinicians focus on symptom management rather than diagnosis. Senior clinicians should be involved with these patients. A helpful approach is to acknowledge to the patient that their symptoms are definitely real and not imagined and can be due to changes in physiological pathways not actual disease.

The reference under this page is actually the west middlesex example: http://www.rcpsych.ac.uk/pdf/The West Middlesex Frequent attendersprogramme.pdf
http://www.wlmht.nhs.uk/uncategorized/ae-programme-reduces-unnecessary-attendances/

To be fair a lot of the references when clicked through on don't seem to mention MUS. However the last 2 were on CBT for hypochondriasis and MUS

Cognitive Behavior Therapy for Hypochondriasis: A Randomized Controlled Trial | Psychiatry and Behavioral Health | JAMA | JAMA Network

Cognitive-behavior therapy for medically unexplained symptoms: A critical review of the treatment literature - ScienceDirect

 

[bobbler]

@hibiscuswahine oh OK here is another one. Better safe than sorry? Frequent attendance in a hospital emergency department: an exploratory study - PMC (nih.gov)

And I've put it here because in the middle of the paper there is actually a business case built out based on 2 frequent attenders (who both had long term conditions and were diagnosed as having anxiety 'playing a big part' and given plans involved psych therapy) suggesting a saving of £13,300 from such intervention.

The other thing to note is that the lead author Jo Daniels is quite well know in the CFS world (thread here: Jo Daniels (on CBT, ME/CFS and Long Covid) | Science for ME (s4me.info)), is based at Bath and was on the ME/CFS guideline committee. She has produced things like: Health anxiety in Chronic Fatigue Syndrome - Health Research Authority (hra.nhs.uk)

This paper has some very strange methodology. It is very much selling based on claims of a business case. Except this business case is now only based on 2 patients, who have MUS. It is in Table 1. And if look at it in the pdf version is on page 5.

But its method is firstly using business data to find the 50 most frequent attenders..... but then 'a psychologist seeking out themes across their case notes to look for homogeinities' rather than looking eg by condition or dept. then it just went into A&E one day and interviewed 25 people. Telling them it would be put verbatim in their notes. And used that survey as the basis for some of the questions. So not people who were identified as frequent attenders?

It seems to hop around and cherry-pick why certain groups were picked in such a strange fashion I can only think there was 'fishing' for things like MUS they felt 'their offering would sell for' and then searching both of these methods for a % they could cite and crowbar in.

It includes gems like:

For medically unexplained symptoms, it is common for serious illness to be ruled out by the ED and patients discharged without diagnosis. In the absence of identified underlying pathology, anxiety will be raised and patients dissatisfied. These anxious patients may become more ‘demanding’ [sic] and thus receive further medical investigation or intervention. If this (perhaps unnecessary) treatment is seen as appropriate and helpful by the patient, this will reinforce the belief that attending the ED was ‘the right thing to do’, and they will likely repeat this reinforced behaviour the next time they experience symptoms that are unfamiliar or induce fear.

and in the recommendations:

Individuals who do not self-harm have psychiatric problems or misuse substances do not receive tailored input, signposting or follow-up. Yet many of these are FAs with unexplained symptoms, long-term conditions or undetected mental health problems (e.g. anxiety/depression) who continue to use the ED as part of their own crisis self-management. A clear care pathway would increase the likelihood of better meeting clinical need and subsequently reduce inappropriate use of health services. This should be included within the FA policy and draw out existent resources, for example, pain clinic, patient support groups and GPs.

and

• Screening tools

While the mental health liaison service is able to offer psychiatric evaluation, it may be useful if the ED has access to a battery of brief assessments which relate to psychological distress. This would inform care plans, care pathway referral and confidence in staff at screening for anxiety and depression which may be key factors in self-care and self-management. Brief measures are available and widely used within primary care settings, so it would be particularly helpful and facilitate good communication if questionnaires commonly used by GPs and national Improving Access to Psychological Therapies (IAPT) services were used in the ED.

I think it is worth fishing this out given a problem with many of these questionnaires is inclusion of symptoms that would be standard in ME, like exhaustion as a symptom and not differentiating this could be due to the ME/CFS etc.

 

[bobbler]

This might be relevant to have its own or another thread (but it relates to the articles above) and I think if I haven't posted this before, even though I drafted a post ages ago when I found it, it was because I didn't quite know what to call the thread,

but this is relevant to the initiatives/pushing of claims regarding 'MUS' and functional being some huge % causing issues. And the type of 'research' and initiative push and the source of it that perhaps is meaning there is, or has been, some active push to 'fish out functional' - to me this seems to be one of the source papers behind this 'idea' that MUS or functional people needed lots of initiative-based research doing on it.

Anyway when I was going through this paper (as it was cited in relation to the CQuin used by DEvon and Exeter): Frequent_Attenders_in_the_ED_Aug2017.pdf (rcem.ac.uk)

I found the following interesting:

The population of patients who are frequent attenders is heterogenous. A UK ED study showed that 65% had Mental Health symptoms, 15% had significant alcohol problems, and 45% had Medically Unexplained symptoms.vi

I found it interesting because I think it was the only paper I found that actually made any claim that frequent attenders really included people with MUS, nevermind any such high %.

And then I looked up this reference vi and it is from the Royal College of Physicians: Designing services for frequent attenders to the emergency department: a characterisation of this population to inform service design - PMC (nih.gov)

PS the link in the reference section where it was vi never worked I just cut-pasted the full description to find it. It is from 2016. Not that 'frequent attenders in the ED 2017' as described in one of the posts above, is something heavily referenced as the reason for the introduction of 'CQUIN' intitiatives.

This is the abstract (my bolding), I think it deserves a page of its own. It 'developed personas' which is particularly disturbing (I'm familiar with them as a tool used in marketing/advertising so you know immediately 'who the type is' and it is very 'sticky' as a tool to get such people fished out), as is the methodology. It's done by Cambridge hospitals and other orgs and seems to all have been done on retrospective data from 2003, yet somehow managing to be able to decide who those people are from paperwork from 13yrs ago.

MUS weren't 'extreme frequent attenders' so the focus as seems to be common for these papers is a switch-and-bait between identifying who is the demographic underlying the problem and then talking about 'MUS' as if it is that.

Abstract
Frequent attendance to the emergency department (ED) is a growing public health concern. Designing services for frequent attenders poses challenges, given the heterogeneous nature of this group. This was a two-part observational study identifying frequent attenders from ED records. The first stage studied trends and developed personas with emphasis on differentiating moderate frequent attenders (attending between 5 and 20 times per year) and extreme frequent attenders (attending more than 20 times).

Stage 2 included a case note review of 100 consecutive frequent attenders. Results showed an increase in frequent attendance from 2.59% to 4.12% over 8 years. Moderate frequent attenders accounted for 97%. Of the 100 frequent attenders studied, 45% had medically unexplained symptoms (MUS), associated with younger age (p<0.001) but not with gender (p>0.05). In conclusion, the ED is a useful hub for identifying frequent attenders with MUS, particularly among moderate frequent attenders; service design for this group should consider a 'whole-systems approach' with integration between primary and secondary care, including specialist liaison psychiatry services where appropriate.

 

[Sasha]

It's a nice idea, I admit. But the irony is that the 'cost to society' and 'getting people back to work' has only ever in the past been raised in relation to illnesses that people don't really believe in - back pain, depression, and of course ME/CFS. And the solution has always been worse than useless. For illnesses like RA, where 0.5% of the population are too disabled to do at least any manual work, never in the history of research did any one ever raise the argument that finding a treatment would help the 'cost to society' or 'get them back to work'.

There's a BBC story online today with the headline, "NHS billions wasted as bipolar patients left 'forgotten and failed'", but I'd agree that this seems rare. I wonder who put the press release out that led to the story. It seems to have come from "experts" who "have told the BBC" stuff.

 

[Hutan]

It's a nice idea, I admit. But the irony is that the 'cost to society' and 'getting people back to work' has only ever in the past been raised in relation to illnesses that people don't really believe in - back pain, depression, and of course ME/CFS. And the solution has always been worse than useless.

When funds to help people with health conditions have to be rationed, cost benefit analyses are often used. For example, in my country medicines for use in in the public health system are purchased centrally by Pharmac. Here is how it decides what medicines to buy:

Pharmac’s objective is to secure, for eligible people in need of pharmaceuticals, the best health outcomes that are reasonably achievable from pharmaceutical treatment and from within the amount of funding provided.

Each year, Pharmac receives many Applications either to fund new pharmaceuticals or widen access to pharmaceuticals that are already funded. Pharmac works within a fixed budget, so choices need to be made about which Applications should be progressed to a funding decision. This involves assessing a large amount of often complex information to identify which options would provide the best health outcomes.

Pharmac’s decision-making framework sees us assessing each proposal using the Factors for Consideration (Factors), which consider health benefits, need, costs and savings, and suitability, including any impacts on other people. Using this information, all proposals are compared and ranked against one another.

In this context, what we call ‘relative assessment’ (comparing one option against another), it is important that applicants provide good-quality, complete and balanced Applications that follow these Guidelines.

So, Pharmac uses cost-benefit analyses for all of the medical conditions it buys drugs for, not just the ones that people don't believe in.

I'm pretty sure that if you search for analyses of the costs of a disease, you will find some for most diseases of consequence. And that's largely because the information is often used when working out how to prioritise society's effort for people with the disease. In my opinion, this is a very good thing in principle, although of course, as with all things to do with humans, practice is often not great.

See here for example:
Costs of Illness for Huntington’s Disease: A Systematic Review

 

[Jonathan Edwards]

So, Pharmac uses cost-benefit analyses for all of the medical conditions it buys drugs for, not just the ones that people don't believe in.

But if it is anything like UK purchasers it will use something like quality adjusted life years, which, as I understand it, are a measure of benefit to the individual. Costs of carers may come in but I doubt it includes value of the person to society as a worker.

If it did you would then discriminate against not only treatments most often used on retirees and women likely to be on maternity leave but, most egregiously, all children. I guess you could try and calculate the loss to society if a child ended up disabled but I have never heard of any purchasing authority doing that.

 

[Utsikt]

Do you even have to measure the economic impact to argue for grants?

Could it be sufficient to just say that the DALY is high, so we should probably try and help these people? Maybe compare to other diseases?

If anyone cares about the numbers they would think ‘Huh, that’s a lot of people that are sick. That has to be expensive!’

After all, most political and bureaucratic decision making on spending is quite inconsistent and based on personal opinions. Only economists assume that we act perfectly rationally with perfect information.

 

[Hutan]

Pharmacy's analysis includes

• effects on quality of life (eg ability to work/perform usual activities, pain/anxiety, mobility) as well as effects on the duration of life
  

For sure, a treatment (or, for a research funder, research with the potential of eventually producing a treatment) that allows children to grow up to be adults who do not require care and ongoing medical interventions would score very highly, higher than something that gives a population mostly aged over 80 one more year of life.

Analyses like these should not discriminate against women on maternity leave or children, I can't see how that would happen. Quite the opposite. A treatment that cures people who are young will produce many years of benefit. The question is not 'is the target population currently in work?'.

 

[Jonathan Edwards]

For sure, a treatment (or, for a research funder, research with the potential of eventually producing a treatment) that allows children to grow up to be adults who do not require care and ongoing medical interventions would score very highly, higher than something that gives a population mostly aged over 80 one more year of life.

I doubt it. I never came across that sort of analysis for anti-Il-6 for children with juvenile chronic arthritis. It would be far too complicated. Curing acute lymphoblastic leukaemia prolongs life but I doubt any of these calculations take into account future periods of disability. It is all much too difficult to ascertain. Apart from anything trials provide no data and it is trial data that purchasers use - I have seen them present it back to me in that form.

For women on maternity leave if the question is not whether they are in work then loss of earnings is not coming into it, as I indicated. If loss of earnings comes into it there is discrimination, surely. For retirees a consideration of whether there is impact on work would again downgrade the value, since there would be no loss of income.

I am pretty sure all these calculations are based on trial data and there simply aren't any trial data taking into account these sort of long term employment factors. I don't think they take into account 'cost to society' in employment terms at all. Those figures come from other non-interventional studies.