Studies about negative consequences of psychogenic diagnoses - help?

[Woolie]

Not sure quite where to post this. I'm working on a paper about psychological explanations of illness. Right now, I'm particularly keen to know of any studies that document negative practical consequences for those that have been misdiagnosed with a psychogenic disorder.

The kinds of cases most likely to be useful here are those where a later diagnosis was made that made a clear mockery of the original psychogenic diagnosis. I'm suspecting the best cases to be things when the final diagnosis was MS, lupus, rheumatoid arthritis or degenerative neurological disease. But they might be found anywhere, really.

Those consequences could be:
- delay in receiving the final correct diagnosis (person's medical history says "beware, somatisizer!", so everyone drags their heels)
- delay in receiving appropriate treatment
- institutionalisation
- denial of practical or financial support
- anything else relevant.

@Sidereal, @chipmunk1, @alex3619, @PeterPositive, @A.B., @Cheshire, or anyone else, any ideas?

 

[Woolie]

PS I have Angela Kennedy's book, so I know about the cases there already. Looking for more, really.

 

[WillowJ]

the case diagnosis for conversion disorder notes that 50% of patients so diagnosed will eventually get another diagnosis. This could make a case for a delay?

 

[alex3619]

There have been lots of cases of misdiagnosed cancer. Delay in treatment meant it became terminal. However these are anecdotal reports, not formally written up. One of those was in a newspaper and is linked to on the Authors otom FB pg.

There are older classic studies of misdiagnosis. I am trying to think who they were. I know they are referenced frequently. These were studies of long term follow up in a hospital setting, and a high number of patients were later rediagnosed.

Some more recent studies show only a small percentage of cases are rediagnosed. However there are severe flaws in these studies typically, such as:

a. They are undertaken in a setting (e.g. UK ) where psychogenic diagnoses mean no more testing.
b. The patients do not typically have access to advanced private health care.
c. The follow up is quite short, such as a year.

All three of these mean the misdiagnoses are not likely to be found.

The classic consequences though are for the diseases claimed as psychogenic. Diabetes, Lupus, MS, cancer, breast cancer in particular, gastric ulcers etc. It really depends on how far you want to go back and what you want to look at. So it depends on what you are looking to write, the actual focus of the paper.

I love the H. pylori story for reasons most don't. Barry Marshall is a hero of mine, someone who went outside of dogma and changed the world. But he also finally proved a theory based on observations that had been around for more than a century, but nobody properly investigated. That is how long it took.

 

[alex3619]

It looks like you are after formal case studies of individuals? To this date I have not been tracking those. Its on my todo list, so I for one would love to read your paper when it comes out.

 

[Woolie]

the case diagnosis for conversion disorder notes that 50% of patients so diagnosed will eventually get another diagnosis. This could make a case for a delay?

Thanks, @WillowJ, I don't suppose you have a source for this case diagnosis (is it DSM, etc?). I might be able to follow the paper trail...

 

[IreneF]

Myasthenia gravis is frequently misdiagnosed. I once found a book written by a lesbian that detailed her medical mistreatment ("she's faking it" etc.) prior to her diagnosis, but I don't remember the title or author's name.

I did find this:
http://www.continuingedcourses.net/active/courses/course067.php
about hidden medical causes of "mental" disorders.

 

[Cheshire]

I'm sure I read an article about people misdiagnosed with "psychogenic disorder", whereas an organic one was finaly found. They said they were more anxious and depressed. I'll try to find it.

It may be interesting for you to contact Meghan O'Rourke. She wrote the recent New Yorker article about ME/CFS, and she's writing a book about ill understood diseases, she talked with numerous patients with autoimmmune disease, a majority of whom have been told at some point that it was just psychosomatic. http://meghanorourke.net/

This article is not excactly what you're looking for (doesn't explore the consequences of misdiagnosis), it's about the Patterns of Misdiagnosis of Multiple Sclerosis http://www.ima.org.il/IMAJ/ViewArticle.aspx?year=2003&month=07&page=489

I'll try to search in my computer if I can find something relevant.

 

[Ecoclimber]

I don't know if this applies but this was in the DailyMail yesterday

Student is 'locked in a psychiatric ward for six days' after complaining of flu-like symptoms to campus health center

Kaitlin Taylor went to the Syracuse University health center as a sophomore in September 2013

She had flu-like symptoms, including a fever, cough, phlegm and congestion

While waiting for medication, she told a counselor that she wanted to change her major and take a leave of absence from school

She was sent to St Joseph's Hospital's emergency room with no medication

After speaking to a psychiatrist and not being treated she was sent to an 'observation room' for six days and given antipsychotic medications

Taylor is now suing university and hospital for improper treatment

University attorney claims school 'denies that it acted inappropriately'

The psychiatrist's notes said that Taylor was in for 'involuntary treatment,' for 'insomnia, pressured speech, disorganized, declining grades'.

 

[Woolie]

This article is not excactly what you're looking for (doesn't explore the consequences of misdiagnosis), it's about the Patterns of Misdiagnosis of Multiple Sclerosis http://www.ima.org.il/IMAJ/ViewArticle.aspx?year=2003&month=07&page=489

Gosh, this is truly terrific, Cheshire, thanks!

 

[OverTheHills]

Gosh, this is truly terrific, Cheshire, thanks!

Terrific or horrific?
From the abstract:

Twenty-nine patients (58%) were initially given 41 wrong diagnoses. While the majority of women were misdiagnosed mentally, orthopedic work-up was offered to the men.

 

[Sidereal]

Woman diagnosed with somatoform disorder; turns out she had a mitochondrial disorder MELAS (mitochondrial encephalomyopathy, lactic acidosis, stroke-like episodes).

 

[Bob]

@Woolie, I think I've only read anecdotes, and I've not seen anything written-up in formal literature, but I'll keep an eye out.

 

[A.B.]

I doubt there are many studies on this. It's medicine's dirty secret. There are many patient stories though.

 

[Esther12]

This list may not be the relevant, but I have a collection of resources on a similar topic to this (more focussed on emphasising psychosocial factors than psychogenic causation) and I tried to remove the most irrelevant links on going through. Some of them are illustrations of bad things, some of them show impact of bad things, some of them include a bit of data that I thought was of some interest. I included things like a youtube on Barbara Ehrenreich even though that's probably not what you're after as I thought it could remind you of something else.

Also, some of this work is done by BPSers who seem to want to downplay the possibility of themselves having caused harm. I think that similar studies done by outsiders would have been more useful for you.


http://ccp.sagepub.com/content/early/2012/10/19/1359104512460862.abstract
http://hpq.sagepub.com/content/early/2012/11/23/1359105312464670.full.pdf
http://researchrepository.napier.ac.uk/2246/
http://www.ncbi.nlm.nih.gov/pubmed/23639303
http://bjp.rcpsych.org/content/185/2/183.2.full
http://www.rcpe.ac.uk/journal/issue/journal_35_2/wood_malingering.pdf
http://forums.phoenixrising.me/inde...reatment-of-functional-somatic-symptoms.5445/
http://www.bmj.com/content/328/7452/1354
http://peoplewithme.com/thread-1485-page-7.html
http://biolmedonline.com/Articles/vol1_4_50-74.pdf
http://europepmc.org/articles/PMC2635361/reload=0;jsessionid=qaAnpWYGl9dmG7tlEwZB.56
http://forums.phoenixrising.me/inde...ty-some-thoughts-for-what-theyre-worth.27693/

http://bjp.rcpsych.org/content/185/2/188
http://link.springer.com/article/10.1023/A:1014328319297
http://forums.phoenixrising.me/inde...fms-vs-autoimmune-disorder.29179/#post-444892
http://blog.oup.com/2014/01/diseases-can-stigmatize-chronic-fatigue-syndrome/#sthash.tsgwNxXg.uxfs
http://forums.phoenixrising.me/inde...er-neurological-conditions.30149/#post-461100
http://link.springer.com/article/10.1007/s10067-014-2752-6
http://forums.phoenixrising.me/inde...cal-service-provision-2008.32216/#post-500654

 

[GalaxiiGrl]

Someone on PR posted a link to this article a few months back, which I found useful enough to save. It has a long list of references at the end, some of which look like they may be relevant to your research:

http://mpkb.org/home/alternate/psychosomatic

Edited to add:
This study, found in the list of references for the above article, looked to be of particular interest, as it lists references that may be even more specific to the subject:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1273448/

 

[peggy-sue]

This is only anecdotal, but a friend of mine lost over 10 years of his life, nearly lost his wife and they lost their chance of having a family, because of a CFS misdiagnosis.

It wasn't until he was taken to A&E that it was discovered he had had heart failure and needed a pacemaker, all along.
He never had CFS.
He had heart failure.

 

[Cheshire]

Found the study I was thinking of...
It's a sociology student work, not something published in a famous review, but I hope it can be of interest!

Eda Clare Smith Gender-biased Diagnosing, the Consequences of Psychosomatic Misdiagnosis and 'Doing Credibility'
http://scholar.oxy.edu/sociology_student/5/

 

[Sidereal]

Neuropsychiatric manifestations of defect in mitochondrial beta oxidation response to riboflavin

A woman with behavioural disturbance (diagnosed as histrionic + borderline personality disorder and non-epileptic seizures), migraine and hyperemesis gravidarum was treated with lots of psychiatric medications (including valproate which caused her to go into a coma) and counselling/psychotherapy resulting in multiple suicide attempts until someone figured out she had a metabolic disorder and treated her with 100 mg of vitamin B2 and her symptoms went away within two weeks.

 

[CantThink]

Do you have this one? http://www.bmj.com/content/331/7523/989?linkType=FULL&journalCode=bmj&resid=331/7523/989