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Determinants of Patient-Oncologist Prognostic Discordance in Advanced Cancer– A Paper Posted Online by JAMA Oncology

2016-07-17

 

Here is a paper, posted for free by JAMA Oncology online, which explores the difference between doctor’s expectations about prognosis and patient’s beliefs.  It seems that the majority of patients disagree with their doctors about how long they have to live, they do not realize that their doctors differ, and the doctors are substantially more pessimistic about their chances than the patients are.  In addition, nonwhite patients tend to be more discordant from their doctors about their prognoses.

In summary, patients are usually more optimistic than their doctors about their chances, and do not realize that their doctors differ; this problem is especially acute for nonwhite patients.  This could be ameliorated by better communication between doctor and patient, but there is a chance that even good communication will not put the patients straight.  It is possible that patients are just more optimistic than their doctors are, for reasons that bear some speculation.

Importance  Patients with advanced cancer often report expectations for survival that differ from their oncologists’ expectations. Whether patients know that their survival expectations differ from those of their oncologists remains unknown. This distinction is important because knowingly expressing differences of opinion is important for shared decision making, whereas patients not knowing that their understanding differs from that of their treating physician is a potential marker of inadequate communication.

Objective  To describe the prevalence, distribution, and proportion of prognostic discordance that is due to patients’ knowingly vs unknowingly expressing an opinion that differs from that of their oncologist.

Design, Setting, and Participants  Cross-sectional study conducted at academic and community oncology practices in Rochester, New York, and Sacramento, California. The sample comprises 236 patients with advanced cancer and their 38 oncologists who participated in a randomized trial of an intervention to improve clinical communication. Participants were enrolled from August 2012 to June 2014 and followed up until October 2015.

Main Outcomes and Measures  We ascertained discordance by comparing patient and oncologist ratings of 2-year survival probability. For discordant pairs, we determined whether patients knew that their opinions differed from those of their oncologists by asking the patients to report how they believed their oncologists rated their 2-year survival.

Results  Among the 236 patients (mean [SD] age, 64.5 [11.4] years; 54% female), 161 patient-oncologist survival prognosis ratings (68%; 95% CI, 62%-75%) were discordant. Discordance was substantially more common among nonwhite patients compared with white patients (95% [95% CI, 86%-100%] vs 65% [95% CI, 58%-73%], respectively; P = .03). Among 161 discordant patients, 144 (89%) did not know that their opinions differed from that of their oncologists and nearly all of them (155 of 161 [96%]) were more optimistic than their oncologists.

Conclusions and Relevance  In this study, patient-oncologist discordance about survival prognosis was common and patients rarely knew that their opinions differed from those of their oncologists.

Authors:

Robert Gramling, MD, DSc1,2,3,4,5,6,7; Kevin Fiscella, MD, MPH4,5,6,8; Guibo Xing, PhD9; Michael Hoerger, PhD10,11,12; Paul Duberstein, PhD5,6,12; Sandy Plumb, BS5; Supriya Mohile, MD, MS13,14; Joshua J. Fenton, MD, MPH9,15,16; Daniel J. Tancredi, PhD9,17; Richard L. Kravitz, MD, MSPH9,16,18; Ronald M. Epstein, MD5,6,7,12,14

Affiliations:

1School of Nursing, University of Rochester, Rochester, New York
2Division of Palliative Medicine, University of Vermont, Burlington
3Department of Family Medicine, University of Vermont, Burlington
4Department of Public Health Sciences, University of Rochester School of Medicine and Dentistry, Rochester, New York
5Center for Communication and Disparities Research, University of Rochester School of Medicine and Dentistry, Rochester, New York
6Department of Family Medicine, University of Rochester School of Medicine and Dentistry, Rochester, New York
7Division of Palliative Care, University of Rochester School of Medicine and Dentistry, Rochester, New York
8Center for Community Health, University of Rochester School of Medicine and Dentistry, Rochester, New York
9Center for Healthcare Policy and Research, University of California, Davis, Sacramento
10Department of Psychology, Tulane University, New Orleans, Louisiana
11Tulane Cancer Center, Tulane University, New Orleans, Louisiana
12Department of Psychiatry, University of Rochester School of Medicine and Dentistry, Rochester, New York
13Department of Medicine, University of Rochester School of Medicine and Dentistry, Rochester, New York
14James P. Wilmot Cancer Center, University of Rochester School of Medicine and Dentistry, Rochester, New York
15Department of Family and Community Medicine, University of California, Davis, Sacramento
16UC Davis Comprehensive Cancer Center, University of California, Davis, Sacramento
17Department of Pediatrics, University of California, Davis, Sacramento
18Division of General Medicine, University of California, Davis, Sacramento

“Popular Delusions and the Madness of Crowds”

2016-07-15

Here is a quote from Public Policy Polling, a national polling organization:

President Obama’s approval rating stands at 49/48, the first time we’ve had him with a positive approval spread in a considerable amount of time. There continues to be a lot of misinformation about what has happened during Obama’s time in office. 43% of voters think the unemployment rate has increased while Obama has been President, to only 49% who correctly recognize that it has decreased. And 32% of voters think the stock market has gone down during the Obama administration, to only 52% who correctly recognize that it has gone up. In both cases Democrats and independents are correct in their understanding of how things have changed since Obama became President, but Republicans claim by a 64/27 spread that unemployment has increased and by a 57/27 spread that the stock market has gone down.

“It’s a fact that unemployment has gone down and the stock market has gone up during the Obama administration,” said Dean Debnam, President of Public Policy Polling. “But GOP voters treat these things more as issues of opinion than issues of fact.”

It is truly bizarre that Republican-leaning voters believe the stock market has gone down and unemployment has increased.  Isn’t there any reality to be had in these minds?

Some New Comments About the Donald

2016-07-15

Here’s a few new comments about Donald and his prospective running mate, Mike Pence, governor of Indiana (from a New York Times article):

D.E May

Oklahoma 

If Mr. Trump does indeed select Gov. Pence, it would actually tell us quite a bit about how he sees himself, what he thinks his weaknesses are, and who he considers his base. It would also indicate that Trump may be a better representative of the modern GOP that many care to admit- it would amount to a doubling down on the bet that white, conservative, evangelical, traditional values voters can continue to carry the party to national victory, despite all emerging demographic trends. All campaigns are about coalition building- candidates craft a narrative, identify a base of people that it will resonate with, and then work really hard to get those people out to vote. Mike Pence would be a perfect encapsulation of the vision (blindness) of the current GOP, and a final rejection of the party’s 2012 post mortem report. It will cost them.

What is by far the most interesting question left is what comes next. When Mr. Trump loses in the fall (and he will- the presidential election is not a straight up or down popular vote; which of the states that Obama won in 2012 can Trump flip? Go check the map, I’ll wait), my interest lies primarily in understanding where the GOP goes from here, after losing three straight presidential elections. At what point does that reevaluation finally occur? As I said, this is by far the most interesting question left in this cycle. Support for Hillary is clear tepid, the polls reflect it. Will the GOP adjust in time for 2020?

RJM

Wash DC 

Should Trump not win (I’m not so certain as you that he won’t) the GOPs ultimate re-evaluation will proceed as the secession of the red states from the union. Wait and see.

Tip Jar

Coral Gables, FL 

The most chilling aspect of your comment is how you so calmly excuse the fact that the Republican Party has normalized white nationalism.

“Traditional values voters”? You mean bigots who want to legally discriminate?

pat

oregon 

Indiana’s law, which Pence said he signed “with a prayer,” makes Indiana the second state in the nation to ban abortion in cases where a fetal anomaly is detected. (Sorry, would-be parents of a microcephalic fetus caused by the Zica virus- you lose.)

It also mandates the burial and cremation of miscarried or aborted remains; restricts fetal tissue donation; and requires doctors performing abortions to have admitting privileges at a hospital or to have an agreement with a doctor who does.

Then there is his infamous anti-lgbt legislation that allowed businesses to discriminate based on their religion.

This guy is as much of a mosogynist and bigot as Trump is.

GreaterMetropolitanArea

NNJ 

Much worse, because he has already been able to implement his nasty opinions in a high elected office.

Jay Savko

Baltimore 

Birds of a feather…

fastfurious

the new world 

3 marriages. 4 bankruptcies. Thousands of lawsuits. Active civil case he defrauded thousands of consumers. Refusal to pay workers: maids, carpenters, bartenders. Retweets white supremacist garbage & lies about it. Insults, degrades, defames those who disagree w/ him. Doubles down on racism & bigotry. Refuses to do research, learn anything, correct himself or apologize. Shuttered failed casinos. Trump shareholders ruined.

What could go wrong? Mike Pence? Great.

I’m stupefied when we look hard at Trump: unstable, erratic, dishonest, corrupt, unqualified, racist, ignorant. The story of his business empire is a lie.

The media – print media including NYT & all cable news channels – continues to cover Trump’s campaign as a ratings bonanza, Trump’s campaign as an exciting horse race. On rare occasions when reporters ACCIDENTALLY say what they really think about him, it’s shocking. (Chuck Todd’s casual remark Trump’s endorsers are destroying their careers/Halpern & Heilemann occasionally saying bleakly how disturbed Trump is, how sad they feel covering him).

But otherwise, the media coverage rolls right along breathlessly covering Trump, the fascinating phenomena, obsessed w/ the horse race trivia – rather than covering the real threat Trump poses to our democracy.

Keep it up. Keep covering the polls, the horse race, the strategy, the trivia. None of it important.

When is the media going to start doing their jobs reporting what’s wrong with this candidate? Never???

Incredulosity

Astoria 

Good news! I’ve done some quick-and-dirty back-of-napkin calculation based on census data, and determined that only approximately 27.3% of the US electorate is over 18, white, straight, and male. So we’re safe, because no female, no LGBTQ ally, and no person of any faith other than Christianity could feel safe if they voted for these two clowns.

Hummingbird

2016-07-13

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Tiny Pollinator

2016-07-11

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My Bad

2016-07-09

Here is the transcript of further communications that I received from Ivan Oransky:

Hi Conrad

Thanks for the response. While it is true that there are nearly 2,800 unapproved comments, that figure neglects the fact that there are far in excess of 20,000 approved comments. The latter either did not make any factual claims, or supported those claims with evidence. The former were reviewed but remained unapproved.
We are in agreement that we will not “go to the trouble to look up everything that is said in the comments section.” But that’s not what I mean by verifying claims in comments. What I mean is that it is the responsibility of the commenter to provide the evidence for his or her claims. Generally that’s done with links, pointing out where facts came from. We may differ on whether we should require such evidence, and many blogs don’t, but we feel strongly that we should not allow any unsupported claims anywhere on the blog, given the nature of what we cover. You don’t have to agree with our approach, but if you want to comment on our site, those are the rules. On your own site, you can have whatever rules you want.
It is not controversial that antipsychotics have bad side effects. But you made some very specific claims in this particular instance: That “acute akathisia is far more common than Janssen claims,” and, seemingly based on that, that “Janssen tries to downplay side effects.” It is certainly possible that both of those statements are true.
However, what is required to demonstrate that they are true is to show the real rate of acute akathisia, and the claims that Janssen makes about the rate of acute akithisia. I appreciate that you sent some data on akathisia rates in your last email, and these are the sort of data and links that would have made it trivial to verify your claims. That being said, if you are not sure whether the 10% figure comes from Janssen, you haven’t provided evidence that akathisia — assuming all of the data refer to acute cases — is more common than Janssen claims, because you haven’t provided any evidence of what Janssen actually claims.
I am sorry if you feel slighted by the requirement to provide evidence for your claims, but I can only say that we hold all commenters to the same standard.
I also see that you have quoted my emails on your blog, which you are welcome to do. I would ask, however, that you redact my email address and cell phone number. Neither of those is listed publicly, and I can’t think of a situation in which I would publish that kind of information as a journalist without requesting permission — which I will not grant. Thanks in advance for taking care of that.
Best,
Ivan
Dear Ivan,

I redacted your email address and phone number at 4:35 PM PDT.  I didn’t even realize they were there.  I don’t think they will fall into the wrong hands as it appears that the post was only viewed a couple of times (probably by you).

Your chain of reasoning about evidence is certainly rigorous and admirable, and I have no concerns there.
 As to akathisia as a side effect of Risperdal, the 10% figure comes from drugs.com, not directly from Janssen.  Janssen’s  “highlights” (the full prescriber’s information isn’t on line) show tables that specify rates of adverse reactions in their studies.  The rate for adults with schizophrenia of akathisia is shown as 10%  (table 8).  For pediatric patients, the rate of akathisia is given as 9% (table 9), and for bipolar patients with adjunctive therapy it is 8%, with monotherapy 9% (tables 11 and 10) .
In table 9, the rate of sedation is said to be 10%.  Since drugs.com gives the rate of sedation as “up to 63%”, their source of information about side effects must be somewhat different.  There are also differences in dosage between different side effect rates; lower-dose risperidone used in combination with olanzapine has a lower rate of akathisia.
The article in “Current Opinions in Psychiatry” that I quoted states that a Cochrane review found that about a third of patients developed extra-pyramidal side effects on either olanzapine or risperidone, but  “25% of patients receiving risperidone required medication to alleviate the akathisia, which was significantly higher than those receiving olanzapine during a 12-week to 12-month trial period.”  This statement suggests that the total rate of akathisia may have been greater than 25%, but that only that 1/4 needed medication.
Therefore, I think it is incontrovertible that Janssen is trying to minimize the rate of akathisia.  Whether you find that satisfactory as a chain of evidence is entirely up to you.
The only change in your comments section that I would definitely advocate (off the top of my head) is what the NYT does with comments: they send an email when the comment is reviewed and approved if the comment is acceptable (or disapproved if not.)  This may or may not be possible in your particular environment.
The only reason I felt slighted is because there was no feedback as to approval/disapproval of a comment.
Thank you for your detailed and thoughtful response.  Keep up the good work.
Sincerely, Conrad.

Comment of the Day

2016-07-09

Bruce Rozenblit

is a trusted commenter Kansas City 1 day ago

America is becoming Afghanistan.

People are armed to the teeth with high power military style weapons.
Anyone can buy guns just about anywhere.
No restrictions on ammunition purchases.
Armor piercing ammo is readily available.
Many states now have both open carry and conceal carry and many of those do not require a permit or any training.
Law enforcement is terrified of the pubic.
The public is terrified of law enforcement.
The government through police brutality openly oppresses certain minorities.
Politicians have lost respect for law enforcement when they don’t get a politically desired conviction.
We have state sanctioned dungeons called prisons that are busting at the seams from overcrowding.
We do nothing to counter massive inequality and hopelessness which breeds contempt and lack of respect for government.
We are on the verge of electing a demagogue for president who knows nothing but talks tough and rails against everything.
His opponent ignores legal requirements of office for convenience.
Congress is completely dysfunctional, accomplishes nothing and thinks its job is to gum up the works so no problems can be addressed. This is done in opposition to the duly elected leader whom whey have no respect for.
Mass shootings have become commonplace.

About the only hurdle left are roadside IEDs and suicide car bombs.

All because of politics, fanatic ideology, corruption in the form of campaign financing and lobbyists, and a misinterpreted 2nd amendment.

This comment was in response to a story in the New York Times about the shooting deaths of 5 police officers in Dallas.

Death Rates Are Dropping

2016-07-09

A surprising story, little noticed, is that death rates from many major diseases are gradually declining.  For example, the rate of death from cardiovascular disease– heart problems– has dropped by 50 percent since its peak around 1960.   At that time, about a third of all deaths were due to heart disease.  People are still dying from heart attacks, but the rates of high blood pressure, atherosclerosis, and kidney disease (a consequence of high blood pressure) have all dropped dramatically.

Another disease that is disappearing is stomach cancer.  This used to be the number one cause of cancer mortality, but now it represents only 1.8% of deaths from cancer.  Along with tuberculosis, stomach cancer is a rare diagnosis these days, especially in developed countries.  The rate of tuberculosis started dropping well before antibiotics effective against the causative organism became available.  It seems that economic development has something to do with decreases in death rates from these conditions and many others.  That is not a difficult leap of logic, but some conditions don’t fit well with this point of view.

For example, dementia rates are decreasing too.  Even with the increase in life expectancy, from which we would expect increases in dementia rates due to more people living to an advanced ages, incidence has still dropped.  From 1986-91, the incidence rate for those over sixty was 3.6%, but from 2004-08, it was 2.0%.  There has been a more than 50% decrease in dementia incidence in the last 30 years.  No generally accepted explanation has been offered.

Another condition that is fading is hip fracture, a calamity that often leads to death within a year.  The incidence of hip fracture has gone down 15-20% per decade for the last three decades.  This is unrelated to the use of drugs that ameliorate osteoporosis, the hypothetically main cause of fractures; the use of such drugs is still rare.  Some say that there has been a parallel increase in obesity, which is associated with better bone mass, but this is does not explain the dramatic drop in rates recently.

Most of these disappearing diseases are related to aging, which has had less impact lately; life expectancy has increased gradually as well, but not quite in step with these changes.  It is tempting to say that people are aging less rapidly than they used to.  It is also possible that improvement in general nutrition from childhood has had some effect.  Many improvements in our lives have had additive effects to reduce rates of most common diseases.  The elimination of lead from gasoline, reduced rates of smoking, and other factors have all helped.

Regardless of the cause, we can at least be optimistic that our children will have healthier lives than we did– assuming that society remains intact in the future.  The possibility that catastrophe could reverse all these changes is unpleasant to consider.  All the more reason to fight for better government, better healthcare, and better relations between nations.

The impulse for this post came from an article in the New York Times, from which the statistics mentioned are drawn.

Don’t Read This: An email exchange (of sorts) with Ivan Oransky, MD, of “Retraction Watch”

2016-07-08

I tried to have an email exchange with Dr Oransky but I couldn’t seem to get my thoughts in a succinct fashion.  I don’t want to send him a long email that he’s not going to really read because it sounds like a rant from some old fart who’s got a bug in his beard.  So I’ll publish it here where no-one will even see it.  Like sending a message in a bottle.

Here is what I wrote, but didn’t send, with his note to me:  (you can see that it’s way too long to read easily.  I got burned by writing too long of a paper in college and I’ve never forgotten it.  That’s why this blog.  I can spout all I want without ever worrying about who’s going to have to take the time to read it.)

My comment, on his blog about Retractions, to a post about a controversy over whether the manufacturer of Risperdal tried to tailor a research paper to hide side effects:

In my opinion, Risperdal’s side effects are intolerable in all but the worst cases of acute psychosis. Prescribing it to children or adolescents is unwise, especially for long periods. I say this having had professional experience with this drug: acute akathisia is far more common than Janssen claims, and long term side effects are also prominent and troublesome (to use common psychiatric euphemisms). Elevated prolactin, weight gain, apathy, dystonias, etc. I have tried this drug (experimentally, not clinically) and you would not wish to have this experience. I am not surprised that Janssen tries to downplay side effects, with good reason; if psychiatrists knew what their patients were experiencing, they wouldn’t prescribe it.

The letter I didn’t send and Oransky’s letter:

You say that my comment contained “verifiable claims and facts that we’d need to verify.”  You never informed me of your disapproval, at least to my knowledge… did I miss something?
How are you going to “verify” my personal experience?

I said that the side effects I had noted in my practice were my personal experience and my opinion.  There’s no way you can verify that unless you prescribe it or take it yourself.  Or take a close look at the literature.

Here is what drugs.com says about risperidone side effects:
“Very common (10% or more): Sedation (up to 63%), parkinsonism (up to 28%), akathisia (up to 10%), dizziness, (up to 14%), tremor (up to 11%), drooling (up to 12%), headache (up to 12%)”
Would you take risperidone unless you were suffering from acute psychosis where the condition is worse than the side effects?
Respectfully, I feel neglected.  I’m interested in publishing my opinion, and if you’re not interested, I can publish it on my own blog under my own responsibility.  I felt that my comments were highly relevant to the issue: that the manufacturer is dissembling about risperidone’s side effects by getting articles published that omit them.
If you don’t think it’s relevant or that I’m wrong, you should tell me.  I only found out by accident that ALL of my comments, even the anodyne ones, are going into your “pending approval” file.  I’m not going to comment at all unless there’s some chance of my comments appearing… meaning there’s less chance of my reading your blog in the first place.
It’s unclear to me whether my comments are appearing with the “awaiting moderation” tag, or not appearing at all.
If you don’t have time to approve the comments, which I see you don’t (“Currently 2,797 comments are waiting for approval.”)
then maybe you should announce a change in policy.

 

On Fri, Jul 8, 2016 at 7:54 AM, Ivan Oransky <ivansciam@gmail.com> wrote:

Hi Conrad, your comment was not approved because it contains verifiable claims and facts that we’d need to verify. Please review our comments policy: http://retractionwatch.com/the-retraction-watch-faq/

 

Ivan Oransky, MD
Vice President and Global Editorial Director, MedPage Today http://medpagetoday.com
Distinguished Writer in Residence, New York University’s Arthur Carter Journalism Institute
Co-Founder, Retraction Watch http://retractionwatch.com
Vice President, Association of Health Care Journalists
Clinical Assistant Professor of Medicine, New York University School of Medicine
 

———- Forwarded message ———-
From: WordPress<wordpress@retractionwatch.com>
Date: Fri, Jul 8, 2016 at 9:43 AM
Subject: [Retraction Watch] Please moderate: “Drugmaker accused of omitting side effect data from 2003 Risperdal paper”
To: ivansciam@gmail.comA new comment on the post “Drugmaker accused of omitting side effect data from 2003 Risperdal paper” is waiting for your approval
http://retractionwatch.com/2015/08/12/drugmaker-accused-of-omitting-side-effect-data-from-2003-risperdal-paper/Author: Conrad Seitz MD (IP: 70.211.70.120, 120.sub-70-211-70.myvzw.com)
Email: conradseitz@gmail.com
URL: http://conradseitz.com
Comment:
Wondering why my comment is still “awaiting moderation” after nearly a year?Approve it: http://retractionwatch.com/wp-admin/comment.php?action=approve&c=1067622#wpbody-content
Trash it: http://retractionwatch.com/wp-admin/comment.php?action=trash&c=1067622#wpbody-content
Spam it: http://retractionwatch.com/wp-admin/comment.php?action=spam&c=1067622#wpbody-content
Currently 2,797 comments are waiting for approval. Please visit the moderation panel:
http://retractionwatch.com/wp-admin/edit-comments.php?comment_status=moderated#wpbody-content

The letter I DID send:

Respectfully, I have two problems:
1) I never got an email saying that my comment wasn’t approved.  I don’t know what the tag “awaiting moderation”  really means: does it mean the comment is invisible to everyone but me, or is it just a tag to tell others that you don’t approve it?  Or that you haven’t yet approved it?
2) If you don’t want to hear about my personal experience even when I’m sure it’s true and it’s highly relevant to the subject at hand (the manufacturer’s dissembling about side effects) then I can publish it in my own blog under my own responsibility.
It’s not clear whether you think I’m wrong or just can’t prove I’m right.
Here is the response I received from Ivan:

Hi Conrad

Thanks for responding. To answer your questions:
— We don’t email everyone to let them know comments haven’t been approved. There just isn’t time. As we note in our comments policy, readers are welcome to email us about why a comment wasn’t approved, or, as you did here, leave another comment asking that, which we will respond to as time permits. Comments that are awaiting moderation are only visible to RW staff and to the people who left them.
— You are of course free to publish your comments on your own blog. We need to verify everything that appears on the site, even in comments, so if you want to send evidence for all the claims, we can review that and consider approving the comment. We have no opinion on whether you’re right or wrong; we just can’t prove that you’re right without evidence.
Thanks.
And here is my response to his response:
Dear Ivan,

It appears to me that your staff is overwhelmed by the volume of comments, because there is a line at the end of the email that you sent me that states “Currently 2,797 comments are waiting for approval. Please visit the moderation panel:”

Based on this information, I can see that there is no point in making substantive comments on your blog because you won’t have time to “moderate” them.  I will, in future, restrict my comments to my own blog, where I alone can take responsibility for what is said.
Sincerely, Conrad.
And here’s what else I wrote, after reflection:

Dear Ivan,

I’m sorry that I can’t get off this subject, and I apologize in advance for the length of this email.  I feel slighted by your statement that “if you want to send evidence for all the claims” — what kind of evidence do you want, copies of my progress notes?  I don’t claim to have special knowledge or to have conducted any formal trials.  I just noticed something that happened in my practice which seems to me should be glaringly obvious based on all the information that has been presented in public; and I stated at the beginning that it was my opinion.
I thought that there should be plenty of evidence out there for what I said, so I googled “Risperdal side effects” and in five minutes, found the following:
Here is what drugs.com (one of the biggest web sites; they feature patient reports about their drug experiences) had to say about Risperdal side effects:
“Very common (10% or more): Sedation (up to 63%), parkinsonism (up to 28%), akathisia (up to 10%), dizziness, (up to 14%), tremor (up to 11%), drooling (up to 12%), headache (up to 12%)”
Then there are the 127 patient experience reports on drugs.com, most of which state that weight gain, akathisia, confusion, and elevated prolactin were troublesome side effects.  Most of them also say that Risperdal was effective for their mania or auditory hallucinations, so it’s not like it doesn’t work.
Drugwatch also has a long piece about Risperdal’s side effects and mentions a study that found a very high incidence of pituitary tumors due to risperidone.
Here is a quote from an article in Medpage Today [http://www.medpagetoday.com/neurology/autism/53288 ]
” most clinicians prescribe risperidone only when the benefits outweigh the risks, says Edwin Cook, MD, professor of psychiatry at the University of Illinois at Chicago”
(“when the benefits outweigh the risks” is a euphemism for “last resort.”)
That article also mentions that Janssen settled with the FDA for $2.2 bn on charges that it “aggressively marketed Risperdal for unapproved indications.”
Here is a quote from an article about second-generation antipsychotics and akathisia:[http://www.medscape.com/viewarticle/703492_4]
“However, 25% of patients receiving risperidone required medication to alleviate the akathisia,”
(25% is more than 10%, is it  not?  I think the 10% figure comes from Janssen’s own research results.)
Further on in the same article:
” It has also been noted that akathisia occurring early in treatment or after increases in doses may be more troublesome and distressing for the patents.[42] Chronic akathisia from risperidone has been reported recently as a reason for a patient to become extremely irritable, easily agitated, and sometimes violent.”
(Reference 42 is a paper entitled, “Akathisia as a risk factor for suicide”, which suggests just how distressing akathisia can be.)
Then there are my own experiences:
I personally experienced akathisia, along with orofacial dsykinesias, accidentally after a single dose of risperidone, and only the fact that I knew it was a side effect made it even remotely tolerable.  If a quarter of patients taking risperidone have these side effects, then prescribing it seems to be a last resort.
Then there were the drug reps who pushed Risperdal to me, all of whom minimized the side effects and insisted that they were tolerable.
Then there were all the patients I treated who developed diabetes after large weight gains from chronic administration of risperidone.
This is what I wrote:
In my opinion, Risperdal’s side effects are intolerable in all but the worst cases of acute psychosis. Prescribing it to children or adolescents is unwise, especially for long periods. I say this having had professional experience with this drug: acute akathisia is far more common than Janssen claims, and long term side effects are also prominent and troublesome (to use common psychiatric euphemisms). Elevated prolactin, weight gain, apathy, dystonias, etc. I have tried this drug (experimentally, not clinically) and you would not wish to have this experience. I am not surprised that Janssen tries to downplay side effects, with good reason; if psychiatrists knew what their patients were experiencing, they wouldn’t prescribe it.
My statements are on the extreme end of the spectrum as to risperidone side effects and indications, but they are not off the wall, and they are supported by abundant literature.  I don’t expect you to go to the trouble to look up everything that is said in the comments section, but apparently you feel the need to do so.  Yet you are unable to rise to that level due to the volume of comments.  I think that you should consider changing your comments policy, but that’s just my opinion, and I’m just an old fart.
Sincerely, Conrad.

Wall Tiles, Slightly Cracked

2016-07-08

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