Healthcare resources used by CFS Patients

[user9876]

A new paper from Crawley and White looks at the healthcare usage of CFS/ME patients before and after diagnosis.

https://bmcfampract.biomedcentral.com/articles/10.1186/s12875-017-0635-z

Health care resource use by patients before and after a diagnosis of chronic fatigue syndrome (CFS/ME): a clinical practice research datalink study

• Simon M. CollinEmail author,
• Inger J. Bakken,
• Irwin Nazareth,
• Esther Crawley and
• Peter D. White

BMC Family PracticeBMC series – open, inclusive and trusted201718:60
DOI: 10.1186/s12875-017-0635-z

© The Author(s). 2017

Received: 27 February 2017

Accepted: 1 May 2017

Published: 5 May 2017

Open Peer Review reports

Abstract
Background
Our aim was to investigate patterns of health care resource use by patients before and after a diagnosis of CFS/ME, as recorded by Clinical Practice Research Datalink (CPRD) GP practices in the UK.

Methods
We used a case–control study design in which patients who had a first recorded diagnosis of CFS/ME during the period 01/01/2001 to 31/12/2013 were matched 1:1 with controls by age, sex, and GP practice. We compared rates of GP consultations, diagnostic tests, prescriptions, referrals, and symptoms between the two groups from 15 years (in adults) or 10 years (in children) before diagnosis to 10 years after diagnosis.

Results
Data were available for 6710 adult and 916 child (age <18 years) matched case–control pairs. Rates of GP consultations, diagnostic tests, prescriptions, referrals, and symptoms spiked dramatically in the year when a CFS/ME diagnosis was recorded. GP consultation rates were 50% higher in adult cases compared to controls 11–15 years before diagnosis (rate ratio (RR) 1.49 (95% CI 1.46, 1.52)) and 56% higher 6–10 years after diagnosis (RR 1.56 (1.54, 1.57)). In children, consultation rates in cases were 45% higher 6–10 years before diagnosis (RR 1.45 (1.40, 1.51)) and 62% higher 6–10 years after diagnosis (RR 1.62 (1.54, 1.70)). For adults and children, rates of tests, prescriptions, referrals, and symptoms were higher in cases compared to controls for up to 10 years before and after diagnosis.

Conclusions
Adults and children with CFS/ME have greater health care needs than the rest of the population for at least ten years before their diagnosis, and these higher levels of health care resource use continue for at least ten years after diagnosis.

Keywords
Chronic fatigue syndrome CFS/ME fibromyalgia Diagnosis Adults Children Primary care CPRD Health care resource use

 

[user9876]

This is basically a trawl of GP records looking for people who have been diagnosed with CFS/ME according to various reporting codes. One interesting comment was:

or referral to a CFS/ME specialist service (Additional file 1: Table S1).

Given other papers have suggested that many referred to specialist services are re-diagnosed this seems dodgy.

More generally the quality of the diagnosis is not taken account of. They also don't seem to have looked at subsequent diagnosis so there is no way of knowing if something else was found later. This would have been a very interesting analysis.

 

[user9876]

What is interesting in this paper (or so far) is that people with ME seem to be seeing the doctor more sometime before diagnosis than the controls. The profile seems to be about 1.5* the number of visits to the GP as controls with it increasing to 1.75 in the years just before diagnosis the the year of diagnosis going up to 2.5 and then gradually back down to 1.7 and 1.6 presumably as people learn that they won't get anything of use from their doctors.

It may be simply that it can take many years to get a diagnosis along with a statistical artifact where those who are seeing doctors a lot to get a diagnosis are pulling the mean from the typical. But there could be something really interesting suggesting that patients could be mildly affected. I think this has been discussed elsewhere where some had health problems for a while before becoming severe and getting a diagnosis (this is what happened with my child).

Of course given the authors I suspect the aim of the paper is to suggest something different but I've not got that far yet.

I think the ratio's are interesting as well in that they don't suggest a huge amount of use of healthcare given how ill people are.

 

[user9876]

The socio-economic data doesn't seem to back Crawley's uneducated drug addict theory.

Rates of health care resource use in the upper three (least deprived) IMD quintiles were similar to rates in the lower two quintiles, although rates of prescriptions were higher in the bottom two quintiles (Fig. 5). There was little discernible difference in relative rates of health care resource use comparing cases vs. controls between the two socioeconomic strata (Table 5, Additional file 1: Tables S6a, b), although rate ratios for tests and prescriptions were lower in the bottom two than in the top three IMD quintiles in the pre-diagnosis periods and in the year of diagnosis.

I think prescription rates may be higher with poorer groups as some doctors prescribe over the counter medicines if people are struggling with costs.

 

[user9876]

Overall I think this paper is a lost opportunity in understanding the case histories and quite what is happening. I've not read the stats in detail but if I was doing it I would want to understand if different patients cluster together and do some exploratory analysis of the timelines. It could be really interesting if we discover that people with ME really did have higher doctor usage prior to becoming worse and getting a diagnosis - I think that would suggest something about the way the disease progresses. But the data as presented it is hard to know if there are long term patients who took many years to get a diagnosis who skew the figures. Without publishing distributions of the data this makes the paper basically worthless because it cannot lead to any solid conclusions.

I also think that for a chronic condition the reduction in healthcare after an initial diagnosis is a stunning (although not surprising) finding. I wonder how that compares to other chronic diseases. You would expect doctors to manage a condition and hence see a rise in appointments after a diagnosis rather than a drop back to previous levels. To me this provides evidence that doctors are largely useless in helping ME patients.

 

[Sean]

What is interesting in this paper (or so far) is that people with ME seem to be seeing the doctor more sometime before diagnosis than the controls. The profile seems to be about 1.5* the number of visits to the GP as controls with it increasing to 1.75 in the years just before diagnosis the the year of diagnosis going up to 2.5 and then gradually back down to 1.7 and 1.6 presumably as people learn that they won't get anything of use from their doctors.

It was four years between onset and diagnosis for me. Initially saw a few doctors (GPs and specialists, including psychs, and also tried some of the less insane non-mainstream options like gentle yoga, etc), but quickly realised they all had nothing to offer, so avoided them all as much as possible.

After being diagnosed and reading what little literature was available (this was pre-internet days, late 1980s*), and trying one or two things that came out of that, it was obvious that they still didn't have much to offer and indeed were going to be potentially very serious trouble at times, and so I continued to avoid them as much as possible.

I may have had a small advantage in having worked in a hospital and got to know how doctors and nurses and the general health system really worked, so had some idea of their limits and didn't waste too much time in beating my head against that wall. Though the times I tried were typically very costly (in every sense) and of little benefit. Hasn't improved a lot since, though in fairness there have been one or two along the way who were good, in as much as they admitted that they and medicine didn't have any good answers for me, and didn't dismiss me or force anything on me. I can respect that.

*With much thanks to @charles shepherd and ME Association, as they were one of the very few useful sources of reliable info for patients at the time.

 

[Ysabelle-S]

A new paper from Crawley and White looks at the healthcare usage of CFS/ME patients before and after diagnosis.

https://bmcfampract.biomedcentral.com/articles/10.1186/s12875-017-0635-z

I most certainly did not see GPs very often before falling ill. Hardly ever, in fact. I had no health problems prior to the virus that caused the ME.

 

[trishrhymes]

Surely a much more interesting comparison would be with patients diagnosed with other long term chronic conditions, eg. MS, lupus, rheumatoid arthritis etc. Then they might get an idea of whether ME is somehow different with respect to use of GP services.

To claim that we have 'greater health needs than the rest of the population' is ridiculous. Do we have greater health needs than the rest of the chronically ill population? Of course we have greater health needs than healthy people. The problem is, those needs are not being met.

Singling out ME for this study, and knowing the track record of the authors looks horribly like justification for IAPT/MUS to take us pesky nuisances off GP's hands.

 

[SamanthaJ]

Surely a much more interesting comparison would be with patients diagnosed with other long term chronic conditions, eg. MS, lupus, rheumatoid arthritis etc. Then they might get an idea of whether ME is somehow different with respect to use of GP services.

To claim that we have 'greater health needs than the rest of the population' is ridiculous. Do we have greater health needs than the rest of the chronically ill population? Of course we have greater health needs than healthy people. The problem is, those needs are not being met.

Singling out ME for this study, and knowing the track record of the authors looks horribly like justification for IAPT/MUS to take us pesky nuisances off GP's hands.

Precisely what I was thinking. I'm sure ME patients use fewer 'healthcare resources' than other chronically ill people, because we only visit doctors when it can't be avoided! And the emphasis here seems to be on us 'using resources', rather than seeking help we're entitled to and need.

 

[Invisible Woman]

My GP has commented to me on more than one occasion that they haven't seen me for ages.

Of course with most patients GPs see them when they are ill. Many of us long term, severely affected ME patients can only get to see our GP when we are well enough. So, they see other sick people at their worst but us at our best, having rested up and prepared in advance for the appointment!

 

[justy]

So sick people go to the Dr more?

In other news - people with no money suffer higher levels of poverty and thirsty people drink more water.

 

[Large Donner]

When we actually understand the mechanisms and the genetics that lead up a to diagnosis of MS, Parkinsons, Cancer, arthritis EDS and ME etc before a patient suddenly one day in a doctors room finally gets a label to apply to their symptoms then papers like this can just be put through the shredder because they only serve to fuel policy, gate-keeping budget driven nonsense.

Most people get their diagnosis of MS in their early 30s, but they didn't just wake up on the same day they received the diagnosis in the doctors office with MS which inflicted them that very day.

People with anaphylactic shock don't get their symptoms until they encounter a peanut for example they don't just get it on the day they encounter their very first peanut, therefore "this condition just started today cos we just gave you a label".

Maybe this paper should be used as an example of just how bad the medical profession is at recognizing early signs of diseases and just how far we have to go in medical science and medical practice.

What are the chances of that though when the purpose is to simply subliminally place it in the busy minds of the average doctor or researcher that x or y or z illness is just malingering or hysteria and that such patients are a drain on resources and to be treated with contempt and disdain.

I note the absence of a control group with MS or arthritis for example on this study to match against the ME group, but there you go. This is what counts as science nowadays and people who point out such flaws are anti science.

The moral of this story is patients with illnesses are undesirable and can affect your bottom line and target driven structure in the NHS. The good ones are the people who don't have signs and symptoms to be worked out by competent doctors.

 

[keenly]

Jesus these con artists are pathetic. The fact that they are receiving million shows how corrupt things are.

 

[Dolphin]

It was four years between onset and diagnosis for me.

5.5 years between disease onset and diagnosis for ME. During that period, I did have a number of medical and health consultations (mainly over 100 private physiotherapy appointments for the multitude of muscle problems I had which were stopping me from playing sports).

Before onset, I was a very healthy teenager (e.g. I often played sport 10 times a week), who very rarely went to the doctor (maybe once a year).

 

[Dolphin]

The second of these three features was not unexpected. We had hypothesised that health care resource use would increase from around the time of patient-reported onset of illness, and the dramatic peaks in health care resource use and symptoms are consistent with CFS/ME being defined clinically as a disease of new or distinct onset. However, the higher levels of health needs and symptoms predating diagnosis by up to 15 years is a somewhat unexpected finding. It conflicts with patients reporting that they were fit and well prior to the onset of their illness [11, 12] (albeit in small qualitative studies), and it raises interesting questions about the natural history of CFS/ME.

Just to point out that there was no question looking at patient-reported onset of illness. They have no idea when the illness started, only when the illness was diagnosed.

It doesn't conflict with patients claiming they were fit and well prior to the onset of the illness because we don't know how long before the diagnosis the illness started.

However, the sustained higher use of health care resources and numbers of symptoms predating this onset is inconsistent with patients’ (or parents’) recollections that they (or their child) had been healthy prior to the onset of CFS/ME [11, 12], and conflicts somewhat with case definitions worded to exclude fatigue that is lifelong or not of new onset. There are several possible explanations for this discrepancy.

Again it doesn't conflict with patients' recollections as they don't know when the onset occurred, only when the condition was diagnosed.

 

[Dolphin]

A small case–control study in England reported higher GP consultation rates over three 5-year periods before a diagnosis of CFS/ME, as we observed in our study [22]. The consultations were for a wide range of symptoms, and the authors concluded that behaviour traits such as disease conviction and somatic concern could not be discounted as aetiological factors.

22. Hamilton WT, Hall GH, Round AP. Frequency of attendance in general practice and symptoms before development of chronic fatigue syndrome: a case–control study. Br J Gen Pract. 2001;51(468):553–8

Aetiology means what causes the illness. It is crap to say that disease conviction and somatic concern can cause a specific illness like ME/CFS.

 

[Dolphin]

These services follow NICE guidance, including specific guidelines for diagnosis, specialist care, and ongoing management, with an overall patient-centred approach to treatment [20]. Although outcomes up to 20 months after treatment are favourable for some patients [25], long-term treatment outcomes for these services have not been reported.

25. Crawley E, Collin SM, White PD, Rimes K, Sterne JA, May MT, CMNO Database. Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME national outcomes database. QJM. 2013;106(6):555–65.

The results reported in this study were pretty crap so it is annoying that they described them as "favourable".

 

[Dolphin]

Unanswered questions and future research

The extent to which the elevated health care needs of adults and children who were subsequently diagnosed with CFS/ME reflect long-term undiagnosed illness requires further investigation.

Good that they say this, but pity they don't keep this point in their heads more when writing the paper.

 

[Dolphin]

Conclusions

We cannot discount the possibility that patients in our study have presented over a period of 10 or more years with symptoms related to CFS/ME, even if a very long prodromal period before the onset of CFS/ME appears to be inconsistent with patients’ own reports of when their illness began and with patients describing themselves as being fit and healthy prior to onset.

Again there mixing up when the illness started and when the illness was diagnosed which could be years apart.

 

[Dolphin]

7901 patients had a new CFS/ME diagnosis recorded during the study period.

The Clinical Practice Research Datalink (CPRD), formerly known as the General Practice Research Database (GPRD), is an anonymised research database aggregating medical records data from participating general practices across the UK (approximately 7% of 10,000 practices in 2012) [5].

Using the figure of 7%, this would mean that throughout the UK 112,000 people were diagnosed with CFS/ME between the start of 2001 and the end of 2013.

The 7% figure is given as approximate. If anyone knows what the exact figure is, a more accurate figure could be calculated.