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Age-Adjusted Death Rates* for Parkinson Disease† Among Adults Aged ≥65 Years — National Vital Statistics System, United States, 1999–2017

sharoncrayn profile image
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Age-Adjusted Death Rates* for Parkinson Disease† Among Adults Aged ≥65 Years — National Vital Statistics System, United States, 1999–2017

"From 1999 to 2017, age-adjusted death rates for Parkinson disease among adults aged ≥65 years increased from 41.7 to 65.3 per 100,000 population. Among men, the age-adjusted death rate increased from 65.2 per 100,000 in 1999 to 97.9 in 2017. Among women, the rate increased from 28.4 per 100,000 in 1999 to 43.0 in 2017. Throughout 1999–2017, the death rates for Parkinson disease for men were higher than those for women."

Source: National Center for Health Statistics, National Vital Statistics System, Mortality Data 1999–2017. cdc.gov/nchs/data_access/vi....

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sharoncrayn
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sharoncrayn profile image
sharoncrayn

To those who wonder about the data before 1999, I realize that PD medication therapy was introduced in 1959/1960, but the mortality data from that initial point up until 1999 CDC data is very debatable in terms of validity given all of it is drawn from published "case" study estimates.

Case in point, quoting Hoehn and Yahr's seminal case study work (1967)...a must read to understand where we have come from.... n= 802, median age = mid 50s (very young case cohort!)....between 1950 and 1965.

"Approximately one-quarter of the patients with Parkinson’s disease who had their disease for less than five years were already severeIy disabled or dead. By five to nine years this had increased to two-thirds(65%) and by ten to fourteen years’ duration, to over 80%."

Obviously multiple factors significantly elevate mortality rates for certain cohorts. So PD mortality isn't one size fits all. Far from it.

From ----

Arch Neurol

. 1997 Mar;54(3):260-4. doi: 10.1001/archneur.1997.00550150024011.

Mortality from Parkinson disease

Conclusions: Compared with nondemented elderly people in the same community, patients with PD have a 2- to 5-fold increased risk of mortality. The risk is strongly related to the presence of severe EPSs, especially bradykinesia. Despite the introduction of levodopa and other advances in the treatment of PD, these factors greatly increase mortality.

And from----

Neurology. 2018 Nov 27; 91(22): e2045–e2056.

Early predictors of mortality in parkinsonism and Parkinson disease A population-based study (Sweden)

Results

The standardized mortality ratio for all patients was 1.84 (95% confidence interval 1.50–2.22, p < 0.001). Patients with atypical parkinsonism (multiple system atrophy or progressive supranuclear palsy) had the highest mortality. In early Parkinson disease, a mild cognitive impairment diagnosis, freezing of gait, hyposmia, reduced dopamine transporter activity in the caudate, and elevated leukocytes in the CSF were significantly associated with shorter survival.

Although patients presenting with idiopathic parkinsonism have reduced survival, the survival is highly dependent on the type and characteristics of the parkinsonian disorder. Patients with Parkinson disease presenting with normal cognitive function seem to have a largely normal life expectancy. The finding of a subtle CSF leukocytosis in patients with Parkinson disease with short survival may have clinical implications.

And from----

Volume 2014 |Article ID 426976 | doi.org/10.1155/2014/426976

Mortality in Levodopa-Treated Parkinson's Disease

Despite the remarkable symptomatic benefits provided by levodopa, multiple recent studies have demonstrated that PD patients continue to die at a rate in excess of their peers. We undertook this retrospective study of 211 deceased PD patients to determine the factors associated with mortality in levodopa-treated PD. Our findings confirm that PD is associated with increased mortality in both men and women. Unlike the majority of other mortality studies, we found that women have a greater reduction in lifespan compared to men. We also found that patients with early onset PD (onset at the age of 50 or before) have reduced survival relative to PD patients with later ages of onset. A final important finding is that survival is equal in PD patients treated with levodopa early (within 2 years or less of PD onset) versus later.

Sharon

pvw2 profile image
pvw2 in reply to sharoncrayn

Because PD is being diagnosed earlier, I would expect that to lengthen the time to reach later stages.

sharoncrayn profile image
sharoncrayn in reply to pvw2

"Because PD is being diagnosed earlier, "

The seminal 1967 work by H and Y (1967) strongly suggests otherwise. Their median age for their case study was 55. But you might be correct in terms of

" lengthen the time to reach later stages."

I don' think anyone knows for sure.

pvw2 profile image
pvw2 in reply to sharoncrayn

Maybe my logic was too obvious to believe stated. If a person will reach the later stages of PD at the certain age (for that person) regardless of when diagnosed (probably the case currently), then if one is diagnosed earlier, the time between diagnosis and later stages would be greater. Say later stages reached is 2020. Diagnosed in 2000 is a greater time until the later stages than diagnosed in 2010.

sharoncrayn profile image
sharoncrayn in reply to pvw2

pvw2,

I think you are missing the point. The "official"diagnosis date is not the issue since most delay diagnosis until they are obviously PD.

Furthermore, typical entry into PD is slowly but surely dropping down in age (from males > 75 ... now down to 60 and now early onset = 10%+, 2% of all PD < 40) for several very good reasons which have NOTHING to do with physician ability to diagnose PD in its very earliest stages.

I doubt whether early onset (<50) significantly delays dyskinesia or dystonia or cognition for example, but it might.

IOW, Do YOPD experience PD differently? Presumably progression is slower.

Granted, AGE is always a primary factor in health.

sharon

in reply to sharoncrayn

"...for several very good reasons which have NOTHING to do with physician ability to diagnose PD in its very earliest stages."

Is it known what those reasons are? Can you tell us, please?

sharoncrayn profile image
sharoncrayn in reply to

Yes I can tell you. They are well known in the medical community or should be.

Start with the prevalent use of pesticides/herbicides/solvents almost everywhere then go to contaminated metals in most of our food supply then go to pharma induced PD as we see with early prescriptions for calcium channel blockers, then on to early TBI, then on to the epidemic of pre-teen and teen "recreational" drug use with meth and amp in particular, etc etc etc

So obvious why this shift in age cohorts is occurring.

Sharon

in reply to sharoncrayn

Thank you!

ddmagee1 profile image
ddmagee1 in reply to sharoncrayn

Thanks for sharing your research and case study results!

ddmagee1 profile image
ddmagee1

But yet so many medical resource definitions, will say, that people don’t die from Parkinson’s. Thereby, giving the impression that it may not be so bad, having Parkinson’s! In my opinion, nothing could be further from the truth. For many of us with more advanced PWP, each day is challenging, in more ways than one!

sharoncrayn profile image
sharoncrayn in reply to ddmagee1

"But yet so many medical resource definitions, will say, that people don’t die from Parkinson’s"

That belief has changed in recent years for a variety of reasons.

Sharon

GymBag profile image
GymBag in reply to sharoncrayn

The average age of the population is increasing as the bubble called Baby Boomers gets older. The older the population , the more you will see deaths related to older age. For example , I suspect that the death by Measles rate has gone down. Fun with numbers.

sharoncrayn profile image
sharoncrayn in reply to GymBag

revised 12/22

" The older the population , the more you will see deaths related to older age"

You make a good and valid point but Global numbers for PD specifically (Lancet) don't totally support your viewpoint, I removed that citation as I finished. You may want to search for it on your own.

CDC data is "age adjusted" data for PD so that effectively answers the issue you have raised.

Interestingly, the percent increase in ALZ vs PD was almost identical versus the dramatic decline in heart disease. Apparently, the lack of NEW positive medical intervention certainly plays a role IN THE INCREASE(50-55%) for ALZ and PD. MS in contrast Increased only 26%.

MarionP profile image
MarionP in reply to sharoncrayn

This might also suggest, could it not, that medical advances for other diseases could have allowed us to survive to the point where the Parkinson's can kill us instead of something else sooner. 25 years ago my family history (and my own) would have had me dead of heart disease long before my PD would have caught up with me, and same for my spouse (25 years ago the heart failure/cardiomyopathy would have made an end, today prospects for survival are better than mine). It's a problem, maybe not today but perhaps just to illustrate my point, to remember about assuming association is causation. As one survives some other things, the remaining sample size validity is muddled without greater sample size with which to counter the loss of probability masked by time effect. Without direct line causes to point to, mortality can sometimes appear increased simply due to statistical artifact. Inferential statistics applied as if they were mechanism can be somewhat misleading and a bit of a pothole.

ddmagee1 profile image
ddmagee1 in reply to sharoncrayn

I can see that, and why! Thanks for your reply!

MarionP profile image
MarionP

Thanks for providing this source, and for the scientifically relevant clarification.

I know it's up to us to do our own homework, but I find myself wondering if off hand this data compares to the longevity\ mortality trend in the general population, ie, is this a feature of Parkinson's, or of changing directions of longevity\mortality in the general population?

In other words, are we gaining or are we losing, relative to what other people in the general population are experiencing? We do know that in some respect the advance of life expectancy in the general population has changed of late, although much of that seems to be related to pathology and mortality in children. Or could this be an artifact of more complete, or earlier, diagnosis, or better data? Curious about any coincidences with other social phenomena as well. Just wondering, offhand, some time ahead I may find myself interested in digging down a little bit. 200 patients if not a large sample from which to draw really general conclusions, and using a single study, regarding a total population of people with PD of, I don't know, is it about 2 million worldwide? I don't know what the incidence and prevalence is in the US alone. It's just a little disconcerting to think that, after some two decades of research and treatment development, survival rates are not improving at least a little.

Good that your suggestions bring into focus practical thoughts relevant to what faces people in everyday life, such as "that's nice, but what do I do about it in my life?" Very nice thanks.

sharoncrayn profile image
sharoncrayn in reply to MarionP

MP:

To answer your first question is somewhat difficult given the lack of highly specific data and CDC's data presentations (very poor), but we have a general idea.

All cause Mortality varies by state, education, income, marital status, and by age cohort (especially 65+)

In general...

ALZ and PD (age adjusted, >65) have increased (per capita) about the same, 50%-56%.

--- PD ranked #14 overall in mortality, ALZ at #6

MS has increased much less, about +25-26%, but still at significant mortality risk (HR=2.01 from 2001-2012)

Heart diseases (various) have declined 20-24%. (US leading cause)

Cancer (various) declined 15% - 25% (#2)..

--- in totals matching heart disease which is a HUGE CHANGE FROM 1950

Suicides have risen +33% (#10)

MBAnderson profile image
MBAnderson in reply to MarionP

10,000,000

MBAnderson profile image
MBAnderson

Thank you Ms. Crayon.

Seems to be dramatic increases recently. Why would that be?

Are these specific cause deaths, i.e., aspirational pneumonia and falling down stairs and landing on our head or are we likely to die sooner without a specific cause -- a combination of things generally clumped together as old age?

NRyan profile image
NRyan in reply to MBAnderson

Cancer is a HUGE one for PD.....I believe 7x more likely? Break a hip.....death in 3 weeks common (this is how my dad died). Strike head during fall (my friend's dad died this way), aspirate, falls/accidents, bowel obstruction.

Gioc profile image
Gioc

#11 . Do not read too much about how it will end, "there are those who are worse off", so says my pharmacist and he knows it.

#12 . don't take Sharon seriously when she says, "I realize most people on this forum don't want to hear about it, but it's reality." Which reality? You are kidding us?😀

rescuema profile image
rescuema in reply to Gioc

Where's #10? I'll insert - Don't Be Sedentary.

sharoncrayn profile image
sharoncrayn in reply to Gioc

Gio:

"Since 1999, we have had roughly a 50% increase in the PD male (>65) death rate. We had about the same percent increase for females"

What don't you understand?

Sharon

NRyan profile image
NRyan

I TOLD you all we will be LUCKY to live to 86 (at all) and be doing as well as John Pepper. Mock and ridicule him as you may. You go John! 🏃‍♂️

Despe profile image
Despe

Merry Christmas to you, too, Sharon! :)

Cagey84 profile image
Cagey84

Hi Sharon, I assume you were referring to my previous post when you used the words "seriously erroneous". I think you are conflating two questions in your post above. First, did the introduction of levodopa increase life expectancy in PD (my post addressed disease progression)? Second, how does the death rate in PD compare with that of the general population?

#1 The study referred to in the video I included showed a delay in going through the Hoehn & Yahr stages. OK, this isn't mortality, but here is a 1993 paper looking at the pre- and post- introduction of levodopa in 1969 focused on one US county, Olmsted in Minnesota - n.neurology.org/content/43/....

Some quotes stand out:

"Lower age at onset of motor symptoms, lower Hoehn and Yahr stage at first neurologic visit for parkinsonism, and treatment with levodopa were all independent predictors of improved survival. "

"Risk of death following initiation of levodopa was significantly reduced (p < 0.001), regardless of pre-levodopa duration of illness. "

The references you quote above do not relate to the pre/post levodopa point.

#2 The death rate in PD, from the numbers you quote above, does seem to be higher than the general population. Indeed, the Olmsted county paper says:

"However, despite levodopa-improved survival, mortality continues to be increased in PD relative to the general population."

A higher death rate does not necessarily mean that PwP are living shorter lives than before. We shouldn't forget that life expectancy for the general population is increasing. According to this paper on the "Parkinson's pandemic", life expectancy has gone up 6 years in the last two decades - content.iospress.com/articl... . The authors' prediction of the PD pandemic assumes an increase in longevity of PwP.

The same paper predicts a major increase in the prevalence of PD, a trend that been under way for some time. The higher the prevalence of a disease that has a lower life expectancy, the higher the difference will be to the observed comparative death rate. Increasing prevalence could therefore be one of the key contributors to the observed increase in comparative death rates.

Gioc profile image
Gioc in reply to Cagey84

Sharon

Here is a possible reality of Cagey, it is the fourth or fifth possible reality in this discussion, but your "reality" is "a reality that we do not want to see" and you do not say what it is. And do you tell that to us pwps? Do we who experience the pain of symptoms every day come to think that death could be the lesser evil? You were joking weren't you? because i cant believe you wrote such a cynical post here. As a trial analyst you give your best, but IMO forget about the demographic analysis.

Merry Christmas 🌲⭐️

Gio

sharoncrayn profile image
sharoncrayn in reply to Gioc

Gio,

" your "reality" is "a reality that we do not want to see" and you do not say what it is. " (Gio)

I said it; you didn't read it or didn't want to...or refused to accept the reality that PD meds don't increase your life expectancy as a "general rule".

"Since 1999, we have had roughly a 50% increase in the PD male (>65) death rate. We had about the same percent increase for females." (Sharon)

Sorry for the dose of reality which you continuously and erroneously label as "cynical".

Get over it my friend and move on. I deal with stage 3 and 4 cancer patients every day, and you and others on this forum do more carping than they do.

Sharon

Parkie- profile image
Parkie- in reply to sharoncrayn

What a terrible thing to say :

"Get over it my friend and move on. I deal with stage 3 and 4 cancer patients every day, and you and others on this forum do more carping than they do"

Especially on Christmas day,,,. No wonder membres like Astra decide to leave the forum upon reading you!

It reminds me very much of your terrible comment about the surgery I am about to have for which you said results would'nt last. How insensative can you get?

These comments demonstrate that you are not here to help but rather to satisfy your ego, show off that you possess some kbowledge. By all means, please leave this forum and its whining pwp and go "help" deserving cancer patients!

Gioc profile image
Gioc in reply to sharoncrayn

Sharon

Perhaps because I deal with life that I see things differently from you, but perhaps you simply do not know how one deals with the subject of analysis and evaluation. There are the data that measures something and there are the situations from which the data arises. To evaluate the data out of context it is easy, any web expert can do it, but to evaluate situations you need to know them and be very familiar with it. You have to go there on the scene, be part of it, live it from all points of view, only in this way you acquire the necessary familiarity to evaluate situations.Here I asked what reality you are talking about but you can't answer because you don't know the context or the way where these data were collected and yet you tell us this is "the reality you don't want to see ... what did you not understand?".

But the question posed above is simple: what caused this increase in mortality? In other words what is the situation?

you do not know? pity because in the research I post below at least they tried to answer.

What I did not understand?

I didn't understand why you wrote this post well aware of what effect it could have caused.

If you already know everything you cannot learn but I would like to let you know a different future is always possible but it has to be dreamed by someone as before being reached and this has nothing to do with "reality".

I dream of a world where neuro degenerative diseases no longer scare anyone and you?

Gio🌲⭐️

ncbi.nlm.nih.gov/pmc/articl...

ParlePark profile image
ParlePark in reply to Gioc

Gio, believe it

sharoncrayn profile image
sharoncrayn in reply to Cagey84

C84;

" First, did the introduction of levodopa increase life expectancy in PD (my post addressed disease progression)? Second, how does the death rate in PD compare with that of the general population?"

I answered these questions in my detailed responses. Re-read them.

#1 obviously l-dopa medications did not increase life expectancy of PD males or females > 65 in the US from 1999-2017 per CDC data. Life expectancy increased 50%. What don't you understand?

#2 re-read my posts about this subject. Death rates per capita varies by condition and dependent variable for each disease.

#3 As to your other comments, you are more than welcome to express your theories, insights, and interpretations of the studies. I don't have the time to respond to them.

Sharon

Cagey84 profile image
Cagey84 in reply to sharoncrayn

O great oracle, please forgive your insubordinate subjects for our insolent use of your precious time. This is so valuable, almost as valuable as our time, given that we apparently don’t have much left.

Astra7 profile image
Astra7

Wow. I joined this site to share thoughts and ideas with fellow sufferers which might make me feel better about my fate.This kind of info does nothing but depress and I think it might be time to say Goodbye and Good luck to all the PWP on the site. May you live long and prosper.

I’ll have to have some Xmas chocolate for breakfast to cheer me up after that miserable read.

Cheers All 😎

Parkie- profile image
Parkie- in reply to Astra7

I totally agree with you. I reported her terrible, terrible reply above calling pwp whining and I too probably will leave the forum. Too bad for the pwp who were looking forward to my reporting on my upcoming surgery... But as dr j says, I need to keep clear of stressful and negative people.

The administration allowing non pwp to post terrible contents contributes to pwp to leave the forum. She's as toxic as was Chris! Let's hope admin does something about it...

Gioc profile image
Gioc in reply to Parkie-

Noooooo🙏 do not leave

Gioc profile image
Gioc in reply to Astra7

Noooooo🙏 do not leave.

ps is there a little chocolate for me too? 😀

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