Most of us can’t live without information we find on the Internet, and, happily, most of us realize that not all information found there is worth our attention. Tests that claim to identify whether or not you have Alzheimer’s disease are among these shabby offerings.
A preliminary report presented at the recent Alzheimer’s Association International Conference in Boston concluded that Alzheimer’s tests on the Internet often yield results that are misleading, lacking in scientific foundation and even “predatory.”
As reported by MedPageToday.com, a panel of dementia specialists and ethicists analyzed 16 online tests for Alzheimer’s. They scored only fair for scientific validity and reliability, and most were deemed to be unethical. In a result more fantastic than factual, the only possible outcome of one test was a diagnosis of Alzheimer’s disease.
Any chance here that they’re selling something based on fear and ignorance?
Julie Robillard, Ph.D., a postdoctoral fellow at the University of British Columbia in Vancouver, presented the data. She said that scores on conflict disclosure-that is, anything that might signal a conflict of interest-averaged near zero. Many of the website tests were affiliated in some way with products or services aimed at people with dementia (and, presumably, those worried about a future diagnosis), but this was rarely disclosed to test-takers.
That finding, as well as a bias toward findings of likely Alzheimer’s disease in some of the tests, led Robillard to conclude that the online tests generally were unethical.
“This is a very predatory marketing strategy for a vulnerable population,” she said. “[S]ome of the tests were clearly designed to tell you had [Alzheimer’s disease] or had something wrong.”
As MedPage Today explained, Alzheimer’s disease is second only to cancer when people are asked what illnesses they dread most. So there’s a huge population out there for slimy promoters to exploit.
The researchers used Internet search terms to find online tests that promised to tell users whether they probably had Alzheimer’s disease and/or should see a doctor for further evaluation. A geriatrician (a specialist in treating diseases and disorders of the elderly), a neuropsychologist, a computer-interaction specialist and a neuroscience ethicist rated each test on four factors of validity and reliability, five on usability and eight on ethics. Each factor was scored on a scale of 1 (very poor) to 10 (excellent).
The tests were found on a range of websites including news organizations, entertainment and commercial interests. Monthly traffic ranged from 200 to 8.8 million hits.
The interested parties completed 13 of the tests, and three were completed by family members or other caregivers. Some tests rendered outcomes in a couple of categories, others displayed them on a continuum and two were strictly pass-fail. In the case of one test, “fail” was the only possible outcome.
On one questionnaire-based test, if you answered even one question with a response that indicated a possible symptom of Alzheimer’s disease, you were advised to see a doctor for evaluation. As readers of this blog know, that’s just silly; diseases and disorders, especially those as complicated and personal as Alzheimer’s, can present in numerous ways and can be difficult to diagnose even under clinical conditions.
Researched determined that tests generally were easy to use; scientifically-for the factors of content, breadth, peer review and reliability-they rated as “fair.” On the eight ethics factors-adequacy of descriptive information, consent, privacy, scope, clarity of outcome wording, outcome interpretation, disclosure of conflicts of interest and quality of advice-only the first achieved ratings better than “poor.”
Then there was that conflict of interest score-a failure in anyone’s book.
The Alzheimer’s Association advises against taking online tests: “[H]ome screening tests cannot and should not be used as a substitute for a thorough examination by a skilled doctor. The whole process of assessment and diagnosis should be carried out within the context of an ongoing relationship with a responsible health-care professional.”