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Pacing for chronic fatigue syndrome ‘not cost-effective’

“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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