Tests Detect Alzheimer’s Risks, Should Patients Be Told?

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This article is about whether people should be given tests that address their risk of getting Alzheimer’s, and whether they should be told the results of the tests. And it’s about physicians’ views on the same topics.

There was a related discussion about a year ago on the local PBS radio station. The interviewee was Dave Iverson, who has Parkinson’s Disease. His father had PD and his brother has PD. He was asked if he wanted to know whether he carried a genetic mutation associated with PD. He said he did not. He was willing to participate in research studies of his genetic profile but told researchers not to pass the results to him. I believe he also said that after he died, researchers could provide the info to his daughter, if she wanted to know.

There are obviously many viewpoints on these topics. Presumably medical ethicists will need to advise medical centers on how to proceed.

Robin

http://www.nytimes.com/2010/12/18/health/18moral.html

THE VANISHING MIND
Tests Detect Alzheimer’s Risks, but Should Patients Be Told?
By Gina Kolata
New York Times
December 17, 2010

MRI brainstem studies – 2 main PSP types and PD

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The two main types of PSP — Richardson’s syndrome and PSP-parkinsonism — are very different. I remember being in support group meetings early on, when the evidence of these two types wasn’t yet published, and wondering if the person sitting next to me was dealing with PSP at all! (“How can your parent not have cognitive impairment?”)

It’s great to have studies now that look in detail at the pathologic, radiologic, and clinical differences in these two main types. RS is easier to diagnose because it’s very different from Parkinson’s Disease or Alzheimer’s Disease; it is called “classic PSP.” PSP-P is much harder to diagnose accurately because it looks so much like Parkinson’s Disease or Multiple System Atrophy.

An Italian study was published this week that looks at MRI measurements of brainstem structures in RS (10 patients), PSP-P (10 patients), and Parkinson’s Disease (25 patients). Using certain measurements, MRIs could be used to differentiate RS from PD but the accuracy of differentiating PSP-P from PD was not as high. The authors say that the such MRI measurements “can, at least partially, contribute to the identification of patients with PSPP versus those with PD.”

The search continues for something to differentiate PSP-Parkinsonism from Parkinson’s Disease and MSA….

I’ve copied the abstract below.

Robin

Movement Disorders. 2010 Dec 15. [Epub ahead of print]

MRI measurements of brainstem structures in patients with Richardson’s syndrome, progressive supranuclear palsy-parkinsonism, and Parkinson’s disease.

Longoni G, Agosta F, Kostic VS, Stojkovic T, Pagani E, Stošic-Opincal T, Filippi M.
Neuroimaging Research Unit, Institute of Experimental Neurology, Division of Neuroscience, Scientific Institute and University Ospedale San Raffaele, Milan, Italy.

Abstract
We investigated the diagnostic accuracy of brainstem MRI measurements in patients with different progressive supranuclear palsy (PSP) syndromes and Parkinson’s disease (PD).

Using 3D T1-weighted images, midbrain, and pons areas, as well as superior (SCP) and middle cerebellar peduncle (MCP) widths were measured in 10 patients with Richardson’s syndrome (PSP-RS), 10 patients with PSP-parkinsonism (PSP-P), 25 patients with PD, and 24 healthy controls.

The ratio between pons and midbrain areas (pons/midbrain), that between MCP and SCP widths (MCP/SCP), and the MR parkinsonism index ([pons/midbrain]*[MCP/SCP]) were calculated.

The pons/midbrain and the MR parkinsonism index allowed to differentiate PSP-RS from PD with high sensitivity (90%, 100%), specificity (96%, 92%), and accuracy (94%, 97%).

Only the pons/midbrain was found to distinguish PSP-P from PD, but with a lower diagnostic accuracy (sensitivity = 60%, specificity = 96%, accuracy = 86%).

Compared to PSP-RS, PSP-P experience a relatively less severe involvement of infratentorial brain.

The pons/midbrain looks as a promising measure in the differentiation of individual PSP-P from PD patients.

© 2010 Movement Disorder Society.

PubMed ID#: 21162106 (see pubmed.gov for this abstract only)

Can patient be expected to remain at home?

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I received these questions via email:

Based on what you understand about PSP, have most of the patients (whose caregivers want them to) been able to remain at home for the duration of the condition — i.e. is it possible for a PSP patient to remain in the home throughout the disease process — whether via home help, hospice and the like? I guess I’m trying to figure out for my mom — unless there is some crazy complication — it seems to me that she could remain in the home for the rest of her life — and any medical equipment that we may need down the line (oxygen, respirator?) could be equipment that we could provide in the home. (she has an excellent medical plan, so cost here is not likely an issue.)

Offhand, I can’t think of any equipment that couldn’t be provided in the home. Does this sound right to you?

(Of course, if she needed surgery, a transfusion, or chemo, or something like that, she would need to go into a medical facility….) But on the whole, from what i understand with PSP, she could, theoretically, remain in the home.

Do you hear the same?

 

The key in determining whether someone can stay at home or not is whether the patient is safe at home and whether the caregiver is safe in providing care. Sometimes it’s not possible to keep people at home. Common reasons for facility placement in PSP are:

* the patient weighs lots more than the caregiver, and the patient cannot assist with transfers;
* the patient requires 7×24 care (or monitoring), and the caregiver cannot provide this; (perhaps the patient is a fall-risk and must be monitored 7×24 for falls)
* the patient is incontinent, and the caregiver cannot deal with this situation; (perhaps because the patient wants to get up multiple times during the night)
* the patient is yelling and verbally abusive, and the caregiver cannot tolerate this;
* the patient has insomnia and often wakes up the caregiver; and
* the caregiver’s mental and physical health are compromised by providing daily care.

In our local support group, probably half of all PSP patients are in facilities receiving some level of care (assisted, skilled) or are at home receiving some level of care.

“Terminally ill patients delay talk of hospice”-5/

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Copied below are excerpts from a Boston Globe article on the reluctance to discuss hospice perhaps due to the patients’ unrealistic outlook.

Robin

http://www.boston.com/news/local/massac … f_hospice/

Excerpts from:
Terminally ill patients delay talk of hospice
Study finds many have unrealistic outlook
By Kay Lazar, Boston Globe Staff
May 26, 2009

Americans tend to procrastinate when it comes to matters involving death and dying, but a Harvard Medical School study published yesterday finds that even many terminally ill patients and their doctors put off conversations about end-of-life choices.

The study, one of the largest to date on the issue, found that only about half of the 1,517 patients with metastasized lung cancer who were surveyed had discussed hospice care with their physician or healthcare provider within four to seven months of their diagnosis.

The vast majority of such patients do not survive two years.

Hospice care – which can be delivered in a home, hospital, or other facility – focuses on managing a patient’s pain and emotional and spiritual needs, rather than trying to cure the terminal illness.

For some ethnicities and races, the likelihood of a discussion about hospice was even lower. About 49 percent of African-Americans and 43 percent of Hispanics had a conversation with their physicians, the study found, compared with 53 percent of whites and 57 percent of Asians.

The longer a terminally ill patient expected to live, researchers discovered, the less likely the subject was to come up.

“Patients who had unrealistic expectations about how long they had to live were much less likely to talk about hospice with their doctor,” said Haiden Huskamp, a Harvard Medical School associate professor of healthcare policy and the study’s lead author. …

Huskamp theorizes that patients who said they had not discussed or considered hospice may not have fully understood their prognosis, or may be choosing to believe a rosier outcome. She also said that, in general, physicians are not well-trained to handle such delicate conversations.

Dr. JoAnne Nowak, 52, medical director of the Partners Hospice and Palliative Care program in Boston, said she is part of a generation that graduated from medical school when end-of-life care was not included in the curriculum. She spent 15 years as a family physician, before retraining and switching her specialty to hospice care in 1999.

“You have a lot of doctors out there who weren’t trained in these conversations about end of life or breaking any kind of bad news, whether it’s a prognosis or difficult treatment,” she said.

That is slowly changing, as more medical schools incorporate some training into the core curriculum.

Just last year, national regulators officially recognized hospice and palliative care as a board-certified specialty.

Still, Nowak said, most physicians find it easier to talk with a patient about chemotherapy options, rather than end-of-life choices and anxieties.

“What are your fears? Your hopes? What do you need to accomplish in the time that remains? Those are long and difficult conversations and doctors don’t have the time,” she said.

Nor are they adequately compensated, said Nowak and others. Health insurance companies typically reimburse doctors by the number of procedures they do, not by the time spent with patients.