Monday, October 25, 2010

Testing for "Chemo Brain" as a Disability

[You may have seen my recent interview with Joanna Morales of the Cancer Legal Resource Center.  Joanna very kindly answered my questions about workplace protections for people with "chemo brain" and she did a fabulous job (See October 4, 2010).

In this week's post, prominent clinical psychologist Robert Ferguson, PhD, discusses how difficult it has been for scientists in general to define cognitive "disability."  He zooms in a bit on one of his case studies.

If you read "Your Brain After Chemo," then you may remember Dr. Ferguson.  He is an expert in memory and attention adaptation training (MAAT) at Eastern Maine Medical Center and we quoted him in our book.  In fact, he and his colleagues led the first pilot study designed to help breast cancer survivors improve their post-chemo cognitive skills.

Has "chemo brain" made it harder for you to function at work?  If so (or if not), feel free to share your comments here.
-- Idelle Davidson]

Now, here's Robert Ferguson's post...
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By Robert Ferguson, PhD

Attorney Joanna Morales' recent post regarding the Americans with Disabilities Act (ADA) legal standard for disability was highly informative.  One theme resonating through her discussion was the complex nature of evaluating disability and why determination is done on a case-by-case basis.

For example, the precise number of individuals whose memory and attention function is affected by chemotherapy remains unknown.  This is in part due to the vast array of different chemotherapies many patients receive.

Different Standards of Testing
Also, scientists themselves use different definitions of "impairment" in different studies.  For instance, some researchers may define an impaired performance on standardized neuropsychological tests of memory as scoring one standard deviation (or an average point spread from an average score) on two out of a half-dozen tests, while another scientist may define impaired performance as three tests scoring one-half standard deviation away from average  ("Average score" refers to the average of the sample of cancer survivors studied).  So different studies can yield different averages (Note that scientists have made some headway in standardizing testing methods).

But Normal May Not be Normal
Adding to the confusion is that many, but not all, of the participants in the research on cognitive effects of chemotherapy score in normal neuropsychological test range. So the tests may not be sensitive enough to pick up subtle changes in someone's thinking abilities.

Tailored Strategies
In my clinical practice I treat cancer survivors with chemotherapy-related cognitive problems who come to me after completing treatment.  I have found that in many cases, simple compensatory strategies and accommodations at work or home can really help.  For example, one young woman who consulted with me was having difficulty concentrating on the job. She worked in a college administrative office where she was responsible for processing expense and reimbursement forms.  Our first task was to review her work environment and her responses to it.  She sat at a desk in an open space and so was subject to auditory and visual distractions.  Also, one well-meaning, friendly co-worker would stop by her work space on the way to the coffee area to chat, interrupting workflow.

After we talked it through, she asked her supervisor to move her to a quieter area of the office with a vertical barrier in front of the desk.  Her employer agreed to the move but wasn't able to provide the vertical barrier.  As a compromise, the employee was allowed to wear headphones and listen to "white noise" or background music on her iPod.  This also was designed to send a non-verbal cue to the talking co-worker that she was busy and engaged and could not be interrupted.  We also worked on attention strategies.  Finally, she learned techniques for being assertive (but still gracious).  This included clearly stating to co-workers her need not to be interrupted unless it was pertinent to the job, and to save non-work discussions for breaks or lunch times.

Impairments Range From Mild to Severe
Of course, some individuals may experience more profound memory difficulties than the example above.  They may simply not be able to perform their jobs at expected levels despite rehabilitative efforts, and/or there may be more than chemotherapy-related causes at play (for example, whole brain radiation treatments or recovery from a brain tumor).

Back to Testing
In that case, it would be good to see a licensed neuropsychologist who performs cognitive testing to identify more severe impairments. This could help justify a move to a less demanding position, support the employee's request for extra (but still reasonable) accommodations, or substantiate a claim for disability.

This kind of testing can still be useful even if the employee scores in the normal range (as mentioned above) as scores provide other types of information.  Neuropsychologists can evaluate whether or not test performance is consistent with an individual's level of education or line of work.  If it is not, that may indicate a post-chemo disability. They also can screen for anxiety or depression, which may be contributing to memory problems.

Eventually the scientific community will understand how to prevent chemotherapy-related memory problems and reduce the need for testing.  For now though, we use the tools available to us.  That means an individualized approach to rehabilitation so that people can move on with their lives.

Dr. Ferguson can be reached at the Eastern Maine Medical Center in Bangor, Maine.  Phone: 207-973-4037.

6 comments:

  1. Hi Idelle,

    I just discovered your blog. Fantastic! I am an Inflammatory Breast Cancer Survivor, and I received dose-dense chemotherapy. My kids say that my brain is like a sieve. I use my smartphone to not forget things. Thanks for a great article!

    Elizabeth Danu

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  2. Welcome, Elizabeth! So glad you found us. You'll find lots of great resources here.

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  3. I have had chemo-brain for three years, now, and though it does seem to be improving, I still deal with enough of it to be discouraging. I am curious, though, as I have recently read that introverts use their frontal lobes to function. I am an introvert. I really have had strong chemo-brain, and even personality, effects since cancer treatment. I have to wonder if there is a connection, as I have also read that chemo damages the frontal lobes. Could this be why some of us seem to notice more chemo-brain than others, and have a harder time recovering from it? Has anyone studied this connection? Would anyone like to? I volunteer for the study :-D

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  4. Robert J. Ferguson, Ph.D.March 2, 2011 at 5:39 AM

    This is an interesting topic and thank you for your posting. The short answer to your question as to whether chemotherapies can affect frontal lobe function is: quite likely. From the few brain imaging studies conducted, it seems some regions of the frontal lobes tend to demonstrate greater metabolic activation during a memory tasks among survivors treated with chemotherapy than those who were not. This suggests that the brain is compensating by using additional circuits in the frontal lobes (among other areas) to complete memory tasks. Dr. Silverman, who also contributes to this site, published a study in 2007 in the journal Breast Cancer Research and Treatment, demonstrating this process among breast cancer survivors treated with chemotherapy. The frontal lobes are important for planning complex behaviors such as setting goals, decision making, initiating action and controlling impulses. While I am unaware of any research directly testing personality effects of chemotherapy, it could be some of these behaviors (also known as “executive functions”) could be subtly affected. Thus, changes in how one typically behaves in approaching everyday life tasks (“personality”) might be observed. As with any health matter, there is likely much variation from person to person, so these effects may not be every survivor’s experience.

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  5. I am currently unable to work due to cognitive impairments from chemo and radiation treatments and I'm on disability through my employer. I sought out a neurologist to get help. I was given a standard memory test used for dementia which of course I could easily pass. I was referred to have a neuropsych testing. This testing only showing a "mild to moderate" impairment and said the cause was depression and anxiety. There was NO reference at all to effects of cancer treatments. I've been told that to qualify for SSDI that cognitive impairment would need to be labeled as "severe". A lawyer reviewed this test and told me that the part of the test called the "Minnesota..(think Personality test) ??..." can be very biased and that the test has implications that I was faking or exaggerating my symptoms. My symptoms are very real and my life has been turned upside down due to the impairments. Are there different tests I could have done to reveal different results? I see a psychiatrist who specializes in disability, but are there other types of doctors I should be seeing? I feel very hopeless now as I may now even be able to get legal representation to get SSDI. Any help you can provide is appreciated.

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  6. What does your lawyer advise that you do?

    As Dr. Ferguson says above, there are different standards of testing and different interpretations of results. You may wish to speak with him or contact the Cancer Legal Resource Center. Here's the link. Good luck. http://www.disabilityrightslegalcenter.org/cancer-legal-resource-center

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