Pacing 'not cost-effective' for CFS

Behind the Headlines

Thursday August 2 2012

CBT was found to be more cost-effective than pacing

“Brain training is most cost-effective treatment for chronic fatigue syndrome,” BBC News reports, while pacing therapies (learning to live within limits) “offer little value”.

Chronic fatigue syndrome (CFS) is a poorly understood and often controversial condition. The most common symptom of CFS is extreme tiredness (fatigue).

This news is based on research that aimed to determine how cost-effective four treatment options were for people with CFS. These were:

  • specialist medical care for CFS
  • cognitive behavioural therapy (CBT) – a type of talking therapy
  • graded exercise therapy – a structured exercise programme that aims gradually to increase how long a person can exercise for
  • adaptive pacing therapy (often just referred to as ‘pacing’) – pacing is where a person with CFS is encouraged to schedule in periods of rest in their day-to-day activities

To determine the cost-effectiveness, three main factors were taken into account:

  • improvement in quality of life
  • the cost of providing the treatment
  • the potential savings to society

Based on the statistical models used by the researchers, CBT and graded exercise therapy were found to be most cost-effective, while specialist medical care and pacing were the least cost-effective.

The researchers did not consider patient preference, which could have an impact.

While patients may well benefit from CBT and exercise therapy, the researchers note that there needs to be investment to ensure properly trained staff are available to deliver them. This study supports the case for this training.

 

Cost-effectiveness of treatment

This study looked at the cost-effectiveness of treatments. This is not the same as judging whether a treatment is effective.

Where a treatment is judged not to be cost-effective, that does not necessarily mean that it doesn’t work at all. Instead it means that it does not provide enough effectiveness for its cost, based on a selected “value for money” threshold. While this may be a distasteful concept to some, it helps policymakers make more objective decisions about which treatments to fund from the finite amount of money available.

Where did the story come from?

The study was carried out by researchers from King’s College London, Oxford University, London School of Economics and other institutions. It was funded by the UK Medical Research Council, the Department of Health, the Department for Work and Pensions and the Scottish Chief Scientist Office of the Scottish Government Health Directorates.

The study was published in the peer-reviewed journal PLoS ONE.

The coverage by the BBC News was appropriate, though it is unclear how the “millions of pounds” they say the economy could save from wide adoption of these treatments was derived. The term "brain training" used in the headline could give the misleading impression that people with CFS were given computer games consoles to play, but that was not what was looked at in this research.

 

What kind of research was this?

This was a cost-effectiveness study based on the results of previous research (the PACE trial) that investigated the effectiveness of four treatment options for patients with CFS.

A cost-effectiveness study models the expected total costs of different treatments or interventions (in this case interventions for chronic fatigue syndrome), and compares the effects on health outcomes, to assess which treatments or interventions can be considered to give the best “value for money”. This is usually done from the perspective of the health service. In this case societal costs such as lost employment and the cost of informal care for people affected by the illness were included. This sort of information helps decision-makers decide how best to allocate limited healthcare resources. As this approach takes into account benefits of improvements in health and the savings made from better care, the cheapest treatment option is not necessarily the most cost-effective. It allows different treatments in different diseases to be compared against each other and against society’s willingness to pay for such things.

 

What did the research involve?

The researchers used data from a previous study on 640 people with chronic fatigue syndrome. This study compared the effectiveness of adding adaptive pacing therapy, cognitive behavioural therapy or graded exercise therapy to specialist medical care for patients with chronic fatigue syndrome. In this latest study the researchers have investigated the relative cost-effectiveness of these interventions by calculating:

  • quality-adjusted life years (QALYs), which are a standard measure used to determine how much somebody’s life can be extended and improved as a result of receiving a particular intervention
  • the one-year healthcare and societal costs involved with providing each intervention (societal costs were considered by the researchers as lost employment and unpaid informal care)

The researchers then compared the:

  • one-year service and societal costs of providing each intervention
  • one-year cost-effectiveness of each intervention in terms of gains in QALYs, and reductions in fatigue and disability

The number and duration of treatment sessions for each treatment was recorded (with time added for support activities) and the costs per hour of therapy were estimated based on nationally registered sources. Specific types of medication were also included in the analysis and unpaid and informal care from family and friends estimated at £14.60 per hour based on national mean earnings. Days lost by patients from work and reduced hours due to fatigue while at work was also recorded. QALYs were calculated from health-related quality of life questionnaires carried out at the beginning of the study (baseline) and throughout the study.

One-year healthcare, informal care and societal costs were compared using statistical modelling and adjustments were made for estimated standard costs.

Earlier findings of the PACE trial were reported by NHS Choices in February 2011.

 

What were the basic results?

The researchers report the healthcare and societal findings of this study separately. The findings include the following:

  • patients receiving specialist medical care alone had significantly lower healthcare costs than those receiving CBT, graded exercise therapy and adaptive pacing therapy
  • the healthcare costs per QALY gained for CBT and graded exercise therapy were likely to be lower than the £30,000 threshold that, in England, has become a standard for the reasonable use of NHS resources, indicating they were cost-effective
  • the healthcare costs per QALY for adaptive pacing therapy were found to be unlikely to be lower than this threshold and, therefore, thought unlikely to be a good use of NHS resources
  • when all three were compared to specialist medical care alone, the incremental healthcare cost per QALY was £18,374 for CBT, £23,615 for graded exercise therapy and £55,235 for adaptive pacing therapy, meaning that CBT appeared to be the best value for money

 

How did the researchers interpret the results?

The researchers say that “their study has found that CBT and graded exercise therapy are cost-effective options for treating patients with CFS. However, for patients to benefit from these therapies there needs to be investment to provide the staff trained to deliver them. The findings we report suggest that such investment would be justified in terms of improved quality of life of patients and would actually be cost saving if all costs including societal costs are considered”.

In discussing the research findings, King’s College London health economist Professor Paul McCrone said “there is now a strong case for the NHS to invest in providing these therapies”.

Another of the researchers from Oxford University said “this new evidence should encourage health service commissioners to provide these treatments to all those patients who need them”.

 

Conclusion

Overall, this study provides evidence to suggest that cognitive behavioural therapy and graded exercise therapy are reasonable value for people with chronic fatigue syndrome. The study does list some points made by the authors that may limit the study findings, including:

  • Service use and information on employment was by self-report, which may have led to some unavoidable inaccuracies.
  • The researchers estimated costs for medications from average data and this may not have reflected the actual costs in different settings.
  • Data were only analysed where baselines and one-year follow-up data were available and the results apply to all costs and benefits over one year only. This is a relatively short time span for an illness that can last a long time and so the researchers call for longer-term studies.

Overall, this is important research into a disabling illness. CFS can last for years. It affects between 0.2 and 2.6% of people worldwide and can be highly disruptive to employment and family life. Any treatments that can be proven to help will most likely be welcomed by those affected by the condition.

Analysis by NHS Choices. Follow Behind the Headlines on twitter.

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Comments

The 5 comments posted are personal views. Any information they give has not been checked and may not be accurate.

liesinmedicalcare said on 08 August 2012

This so called "study" is absolutely the most ludicrous piece of nonsense that has been printed about how to treat ME. It is obvious that the NHS desperately seeks to find ways to not treat ME patients and continue to minimize and discredit the seriousness of this horrid illness in order to save money. What type of patients were studied? THose who are tired, depressed, stressed? Certainly true ME patients were not in this study or perhaps they had to drop due to a relapse. For that is what happens for those with ME when any exercise is attempted...the illness is made worse, sometimes much worse. If a patient does not have post exertional relapse then it is not ME. Now some cases of adrenal fatigue may not get better with forced exercise, however ME patients will become seriously more ill, like back to bed seriously ill, or not able to care for themselves seriously ill. Exercise intolerance or post exertional relapse is diagnostic! Why would NHS risk patient's lives, children's lives by forcing exercise? To save money? This is beyond comprehension.

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Barry Savage said on 07 August 2012

The press are reporting this as an effective treatment for ME. Maybe I don't understand it, bujt that doesn't seem to be true. Is the following layman's analysis correct?

It says "Participants were selected using the Oxford diagnostic criteria for CFS which required disabling fatigue to be the primary problem" so they had fatigue which "affects both physical and mental functioning" for the previous six months "present for more than 50% of the time"

That definition excludes patients with "a suspected disease that is likely to cause fatigue". Therefore it would excluse patients with ME because they have, by definition, gastrointestinal symptoms, sleep disturbance, temperature instability, CNS impairment, cerebral dysfunction, muscular pain and post-exertional malaise. Fatigue isn't usually the primary problem for people with ME.

The study says that CBT is the most cost-effective treatment at £18000 per patient. CBT is a series of talks "aimed to change behavioural and cognitive factors assumed to be responsible for perpetuating symptoms and disability" and it costs £110 per hour or about £900 per patient.

So it seems the conclusion is that if 20 patients who complain that they have felt too tired to function properly more that half the time for the past six months or more are treated with several talks to attempt change the way the think and behave then just one of them will get better.

Or am I mistaken?

.

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FirstSong said on 04 August 2012

The big picture of this study:

This treatment delivered to most CFS patients in the UK will cost hundreds of millions.

Cost savings to the economy if that is done will be in the range of tens of millions of pounds.

Meanwhile, this disease will still cost the UK economy billions of dollars a year even if patients receive CBT or GET (the annual economic costs per patient after receiving CBT or get was over 20 thousand pounds!)

If we want to seriously tackle the disease burden and economic costs of this disease we are going to have to develop targeted treatments that lead to improvements of more than just a few percent.

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KALUS said on 02 August 2012

The BBC News did not report on this issue. They ran the press release the authors of the study sent. It is not the same thing. Had they actually reported on the issue there would have been a health correspondent byline.

Secondly, if you read the entire original study, the PACE trial showed GET and CBT were not effective for the majority of participants being reported as effective for only one third of participants.

Pacing, as studied by most CFS researchers, is unrelated to resting. It requires only discontinuing exercise or activity when symptoms are exacerbated. Unlike GET and CBT there is no cost associated with this form of therapy.

The PACE trial did not use the standard research definition which includes the cardinal symptom of post exertional malaise unrelieved by rest lasting 24 hours or longer upon minimal exertion (PEM). This limits the ability of the results to be extrapolated to patients who do have this cardinal symptom of exercise intolerance. Many patients with PEM often report severe relapses associated with pushing beyond the limits of their energy envelope. This ethically limits the ability of researchers to safely study exercise in this specific subgroup.

Some of the authors have reported, in this study and others, financial conflicts of interest with disability insurance and litagators.



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Smiffy51 said on 02 August 2012

The £5 million PACE trial found that CBT and GET only gave an 8% subjective none scientific improvement for those people studied. At the end of the trial they were still profoundly disabled and could not walk as far as someone with major head trauma.

There has so far been no taxpayer funded research into the underlying cause of the devastating and painful neurological illness myalgic encephalomyelitis; all research funding has been given instead to the psychology of mild vaguely defined fatigue under the meaningless umbrella term 'chronic fatigue symptom'. Such studies are run by psychiatrists known to be working for health insurance firms (who do not want to pay out to M.E. sufferers); these psychiatrists financially benefit from the current 'fatigue' clinics.


If the so-called treatments graded exercise and cognitive behaviour 'therapies' were effective there would no longer be 400,000 sufferers of myalgic encephalomyelitis in the UK as these 'treatments' are all that is offered. Alarmingly, the numbers affected, a quarter of whom are permanently bed or house bound, increase daily. These severely affected patients receive no specialist care whatsoever. A large number of children are affected.


Rather than being being effective, graded exercise actually worsens the illness, often permanently - exercise intolerance is a diagnostic symptom of M.E. Cognitive behaviour therapy, insultingly designed to help sufferers of an illness classified by the W.H.O. as physical to overcome their supposed 'abnormal illness beliefs' makes no difference at all.


No other neurological illness is treated solely by (admittedly very cheap) psychobabble.

Here is ayoung woman's account of her M.E., from which she recently died. CBT & GET would not have helped her:

http://www.investinme.org/EmilyCollingridge.htm

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Analysis by Bazian

Edited by NHS Choices

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