Re: On the subject of dying FROM MS

Thanks for that, but it is the most confusing thing I've ever read. :)

--
Heath
"Dadman (Larry C. )" <L-cravling@xxxxxxxxxxx> wrote in message news:1143339939.730718.282950@xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
A posting I copied from 2003 is copied below.
FWIW (LarryC/LCRAVLING(at)HOTMAIL.COM)
=================================================

MORTALITY STATISTICS


Peter Colville AM, MBBS, FAFRM, RACP

Medical Director,

National Multiple Sclerosis Society of Australia


------------------------------------------------------------------------


Summary

This article is based on information about age at onset and death of
300
people who had MS and died during an 18 year period, without regard to
whether MS had any clear relationship to the cause of death. During the
period of study perhaps four times as many people would have died with
MS
in this region. All available case information was used but clearly
this is
not a random sample

This data suggests that, when MS causes a significant persisting
disability
warranting some assistance in management, the prognosis for life is not
easy to predict but the life expect- ancy from onset is approximately
halved. Sex and age at onset have little effect on this prognosis, but
data
at the extremes of age of onset is inadequate. Relatively malignant
cases
occur at all ages. Trends in this study should be confirmed or
otherwise by
a similar study with access to more complete data.


------------------------------------------------------------------------


There is a limited literature on mortality in persons with multiple
sclerosis, somewhat similar to the belated recognition of the reality
of
neuropsychological changes in that disease. Much has been written about
the
process of denial of reality by patients with MS and other disabilities
-
perhaps there is also a similar problem for those caring for diseases
without cures.

The following data is taken from mortality known to the MS Society of
Victoria during the period 1970-1991. The region had a mean population
of
4,100,000 for the years 1980 to 1990. Deaths each year would be about
80
(based on a prevalence of 50/100,000 and average life expectancy of 25
years: 50x40/25 = 64). Government registered annual deaths in which MS
is
recorded averaged 30 - a commonly noted discrepancy in such records of
registration of MS at death as a significant diagnosis. During the
period
1980-1990 normal life expectancy has increased by five years for the
general population.

Much published data refers to duration of illness from onset or
diagnosis
for different age groups and infers a poorer prognosis for cases of
later
age at onset. This however makes three assumptions:

1. That the disease process began at or near the time of the first
symptom or diagnosis. Diagnosis has frequently been delayed for
many
years - recently further confirmed by a temporary increase in
incidence for some years when M.R.l. imaging became available. It
has
also been shown that many patients have multiple old silent
lesions at
the time of major (diagnostic) symptom onset.

2. It is stated that the poor prognosis of late onset MS is related
to
those cases with chronic progressive course from onset. However,
such
cases have an age distribution 10 years later than those with a
relapsing/remitting course. It should be noted that in those cases
where early age of onset with relapsing/remitting disease is
followed
by a chronic progressive phase, the interval is approximately 10
years. This suggests the probability of a sub-clinical onset of
the
order of 10 years earlier than the recorded onset data in those
people
progressive from onset.

3. Clearly there are cases at all ages which have a malignant course
and
others where the course is relatively benign or in whom death is
unrelated to MS. Late onset benign cases can hardly demonstrate
the
many years of survival shown by those cases with an earlier onset
age.

In the figures quoted in this study no correction has been made
for
the following:
the effect of migration;
fluctuation in birth rates in different years;
the number of persons in each age group.

[Image] [click on icon to see table 1]

The exception is that the age specific annual death rates in each age
group
of the general population in 1984 (the median year of death) has been
taken
to apply to the whole study. The errors that these factors might
introduce
should not alter the nature of the results in any significant manner.

Table I shows the predicted prevalence in five year age groups based on
the
recorded date of onset and death for 307 cases for whom that data is
The
predicted peak of prevalence for males is in the age group 50-54, and
for
females 45-54. The five year survival is about 80% over age 25 up to 54
for
males and 59 for females. It then falls progressively to 40% at age 74
years.

The five year mortality rate under age 45 is almost 100 times the
equivalent general population figure,(only maximally 2.3 per thousand
in
the normal population). It then falls to ten times at age 74.

Clearly the rising prevalence up to age 50 reflects the faster
accumulation
of new cases with progressively later onset than the total mortality
prior
to that age, although that has been of the order of 30%.

Similarly the decline in prevalence above age 50 relates much more to
increasing mortality in survivors than the decrease in incidence in
those
older age groups. In so far as death seems to result from causes other
than
related to MS, death must still be seen as in some way related to this
disease in 90% or more of deaths under age 75 years.

[Image] [click on icon to see table 2]

Table 2 shows the age at death of all cases by sex and by five year age
groups, and the difference between the reported and expected mortality
in
those age groups. This presupposes that all (337) are at risk
regardless of
age at onset - assuming that clinical onset is not a very significant
event.

Mortality in survivors is never less than ten times the normal age
specific
death rate between age 25 and 70 years, even if one assumes that all
cases
are at risk even before onset and not just those cases already
diagnosed up
to that aqe.

[Image] [click on icon to see Figure 1]

Figures 1 and 2 show the scatter of years of survival after "onset" in
the
group of 105 males and 202 females. Whilst confirming a significant
number
of malignant cases in all age groups, it does not suggest that death or
survival is age related in either sex. The median age at onset in both
sexes is 40 years.

In this series there are two peaks on the age of onset graph at 25-30
and
40-45. This is presumably due to a small number in the intermediate age
group 35-40. Since this statistic has not previously been reported, it
may
simply reflect some non-random feature in the case selection process.

[Image] [click on icon to see Figure 2]

Figure 3 shows the shape of the age specific incidence (onset) graph
which
this data would predict. This graph reflects the steps in columns 2(M)
and
3(F) of Table 1 rather than the presented cumulative figures. This
graph
suggests that onset age as recorded is more related to diagnosis than
earliest symptoms.

[Image] [click on icon to see Figure 3]

Figure 4 shows the shape of the prevalence graph these cases would
predict.
This is, having regard to the possible errors in this sample, very
close to
published age related prevalence data in many countries and the age
distribution of current registered cases with this MS society. In both
sexes the available numbers for those having onset under age 20 and
over 60
are not significant.

The possibility that there may be an identifiable small subgroup of
persons
with MS who have a malignant course that relates to genetic or other
factors exists. A larger and more comprehensive register of at least
2,000
deaths would be needed to achieve adequate numbers for each sex in the
younger and older age groups.

[Image] [click on icon to see Figure 4]


------------------------------------------------------------------------


Conclusion

When MS causes a significant persisting disability warranting some
assistance in management the prognosis for life is not easy to predict
but
the average life expectancy from onset is approximately halved. Sex and
age
at onset have little effect on that prognosis, but data regarding
younger
and older age onset is inadequate.

The age distribution of deaths could be consistent with the proposition
that the annual risk of disease progress which will cumulatively
decrease
life expectancy remains constant and unrelated to clinical onset age.
There
could be an annual risk factor in susceptible individuals after a
latent
interval in adolescence. This would not preclude the presence of
specific
genetic or other risk factors in groups of cases which determine that
they
have an increased annual risk of deterioration.

Clearly the rising age specific prevalence up to age 45 results from
accumulation of cases of progressively later onset faster than
mortality.
The subsequent fall is substantially due to MS related mortality. The
five
year mortality rate of MS survivors at all ages over 25 years is of the
order of 20% or more. In older age groups (60+) the five year MS
related
mortality rate rises but the normal age related mortality of the
general
population also becomes significant.

If one assumes that this recorded data is nearly all from a worse
prognosis
group, then it represents only one third of the probable deaths and the
reported five year mortality at any age group would thus be reduced to
about one third of that reported.

It would be possible to derive the shape of the prevalence and age
related
incidence graphs for MS from a data base of all cases which provide age
at
onset and death. Although the data used here is clearly a limited
sample
the method warrants further study with a larger and more complete data
base.

.

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