The Economic impact of ME/CFS

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original version of:

The Economic impact of ME/CFS:

individual and societal level costs

Leonard A , C Benton , Valentine ,

Abra and -Harding

Dynamic Medicine 2008,

7:6doi:10.1186/1476-5918-7-6

Published: 8 April 2008

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Abstract (provisional)

Background

ME/CFS is characterized by debilitating fatigue in

addition to other physical and cognitive symptoms. It

is estimated to affect over 800,000 adults in the U.S.

ME/CFS often results in diminished functionality and

increased economic impact.

The economic impact of an illness is generally

divided into two categories: direct and indirect

costs.

Despite high prevalence rates and the disabling

nature of the illness, few studies have examined the

costs of ME/CFS at the individual and societal level.

In fact, of the four studies examining the economic

impact of ME/ME/CFS only two used a U.S. sample.

The current study used community and tertiary

samples to examine the direct costs of ME/CFS.

Methods

Using archival data, Study 1 examined the direct cost

of ME/CFS in a community-based sample in Chicago.

Study 2 estimated the direct cost of ME/CFS in a

tertiary sample in Chicago.

Both Study 1 and Study 2 assessed direct costs using

office visit costs, medical test costs, and medication

costs.

Results

For Study 1, the annual direct total cost per ME/CFS

patient was estimated to be $2,342, with the total

annual direct cost of ME/CFS to society being

approximately $2 billion.

In Study 2, the annual direct was estimated to be

$8,675 per ME/CFS patient, with the total annual

direct cost of ME/CFS to society being approximately

$7 billion..

Conclusions

Using ME/CFS prevalence data of 0.42 and indirect

costs estimates from Reynolds et al., 2004, the

direct and indirect cost of ME/CFS to society was

estimated to be $18,677,912,000 for the community

sample and $23,972,300,000 for the tertiary sample.

These findings indicate that whether or not

individuals are recruited from a community or tertiary

sample, ME/CFS imposes substantial economic costs.

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Discussion

These findings suggest that there is a high economic

cost associated with ME/CFS for patients, their

families, and for society as a whole. This study has

provided a conservative estimate of the direct

economic impact of ME/CFS, with a mean annual cost

of $2,342 to $8,675 per patient.

When extrapolated to the U.S., the direct cost to the

American health care system is estimated to be from

$1, 957,912,000 to 7,252,000,000. In other words,

the total annual direct estimated costs for the

tertiary sample were nearly three times the cost of

the community sample.

It is at least possible that these differences might

have been due to the differing characteristics of the

sample. In study 1, the majority of participants with

ME/CFS were minorities, whereas in study 2, 90%

were Caucasian.

There were also differences in the educational

attainment between the two samples. Among those

with ME/CFS in study 1, only 48% had at least

standard college degree, whereas among those is

study 2, 71% had this level of educational

attainment.

Finally, the majority of those in study 1 had never

been diagnosed with ME/CFS, whereas all of those

participants in study 2 had this diagnosis.

Very possibly, those participants with ME/CFS in

study 1had less resources to devote to medical care,

and the majority did not even know that had this

illness.

In contrast, all of those in study 2 had a ME/CFS

diagnosis, and they had possibly had more resources

to invest in the medical diagnosis and treatment of

this illness.

These data suggest that the economic cost of

ME/CFS will vary between those in community-based

samples who might not have been diagnosed and

those in tertiary clinics, who might have a diagnosis

and more resources, and these differences may

influence the societal cost of ME/CFS.

These economic losses can have a substantial

long-term impact on ME/CFS patients standard of

living and quality of life. With high unemployment

rates among ME/CFS patients, the direct cost of

medical services could become even more

problematic to individuals and families due to a loss

of health insurance benefits and thus, increases in

out-of-pocket medical expenses.

Our estimate of the direct cost of medical expenses

was $2,342 to $8,675 per ME/CFS patient. This

estimate is not directly comparable to previous

estimates of the direct cost of ME/CFS due to

different sampling strategies.

Bombardier and Buchwald [5] estimated an average

annual medical expenditure of $1,031 per ME/CFS

patient.

Estimates from Lloyd and Pender [11] and McCrone

et al. [6] used samples from Australia and the U.K.

respectively, and due to different health care

systems and prevalence rates, are not directly

comparable with the current estimate.

In addition, these studies had a number of other

differences that might account for the varying cost

estimates (e.g., use of different diagnostic criteria

and definitions; differential levels of severity of

ME/CFS symptoms and other comorbidities).

In addition to the direct medical costs imposed on

individuals and society, there is also a substantial

economic costs related to lost productivity.

Participants with ME/CFS were receiving more

disability benefits, and were more likely to be

unemployed or working part-time than their control

counterparts.

Indirect costs to the individual and society can be

estimated according to a study conducted by

Reynolds et al., [7]. According to their study,

approximately one third of patients with ME/CFS,

who in other circumstances would have participated

in the work force, stopped working and for those who

continued working, their income was cut by a third.

This change in employment status represented an

estimated annual loss of $20,000.

Although our data did not include salary variables

and indirect costs could only be examined in terms of

work status change and increased disability, we

could apply the Reynolds [7] figure ($20,000) to our

sample.

For study 1, using estimates from Reynolds et al.

[7], we could estimate that the annual indirect cost

to society to be $16,720,000,000 (836,000 X

$20,000) or almost $17 billion.

Together the total indirect and direct costs to society

could be estimated to be $18,677,912,000, or over

18 and a half billion dollars.

For study 2, the estimated total annual indirect cost

to society is 836,000 X $20,000 = $16,720,000,000.

Therefore, in study 2, together the total indirect and

direct costs to society equals $23,972,300,000 or

close to 24 billion dollars.

For studies 1 and 2, the total direct and indirect

costs due to ME/CFS were estimated to range from

17 to 24 billion dollars.

When interpreting the findings from the current

study, some limitations should be considered.

First, our study relied on archival data, and therefore

did not include some information that would have

been helpful in estimating the economic impact. For

example, we did not have an estimate of salary or a

measure of the actual number of work hours lost.

According to McCrone et al. [6], an important

variable in estimating the indirect cost is the role of

informal care providers. Informal care providers refer

to friends or relatives that help care for the patient

without remuneration, but still incur an opportunity

cost.

Our archival data did not include variables to

estimate these types of financial losses. Therefore,

we could not calculate costs due to lost productivity,

and estimating a specific indirect cost was

impossible.

Another limitation to the archival data is that

participants in the community based sample provided

their medical records and completed the self-report

questionnaires between 1995 and 1997. Participants

infrequently listed alternative medications (herbs or

supplements) or treatments (acupuncture) that are

more commonly used now, but likely were not

frequently used 10 years ago.

Participant medical record information also did not

include information about hospital stays or

ambulatory use. Therefore, our estimates of the

direct costs of ME/CFS are likely an underestimate

because they do not include these types of service

use.

In addition, current medication usage information

relied on participant recall of service use, and

therefore may not be accurate. However,

corroboration of participant medication use was

obtained by the examining physician for more than

three quarters of the participants in Study 1.

Also, other means of data collection besides

self-report data were analyzed. The use of medical

records likely provided an accurate indication of

number of office visits and medical test usage.

However, medical records were not available for

participants in Study 2. These limitations should be

addressed in future research. Ideally, estimates of

the economic impact of ME/CFS should include

estimates of both direct and indirect costs.

This study suggests that the direct costs of this

illness are incurred variously, both by the individual

patient and by society. For the community group, the

prices of prescriptions and medical services and tests

are calculated, but we were not able to determine

what portion was covered by insurance and what part

was paid out-of pocket.

Furthermore, comparison to the control group shows

that while the ME/CFS group spends more the total

annual direct costs (the mean sum of medication,

medical test, and medical office visit costs; $2,342

versus $1,133), this difference only approached

significance at the .06 level.

More research is clearly needed to be able to answer

whether health insurance premiums are more costly

on average to those with ME/CFS. It is certainly

possible that the direct costs to individuals, primarily

deductibles, might be less than estimated. It is also

possible that there might be added costs of this

illness to the medical industry, but more information

is needed concerning retail prices-per-unit in order to

calculate industry costs.

In conclusion, et al. [1] estimates that more

than 800,000 adults in the United States have

ME/CFS. This figure combined with cost information

reported in the current study suggests that ME/CFS

has substantial economic costs, whether one uses

samples recruited from the community or from a

tertiary care clinic.

These cost estimates in combination with high

prevalence rates are some of the reasons that more

research into the cause, effective diagnosis, and

treatment are necessary.