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.