More and more people rely on information obtained from online resources, and that is a normal process. On the pages of this blog, there are links to several free self-administrated tests for Alzheimer’s. They do not target to perform clinical diagnostics on the patients with potential early symptoms of the disease, and in most cases, there is a disclaimer that you cannot use it as valid tool and make serious assessment, based on the received results.
Specialists are also voicing their opinion that most online tests for Alzheimer's disease, freely distributed on the Internet, are both unreliable and unethical.
An expert panel found that 16 freely accessible online tests for Alzheimer's disease scored poorly on scales of overall scientific validity, reliability and ethical factors, according to new data reported at the Alzheimer's Association International Conference 2013 in Boston.
"As many as 80 percent of Internet users, including a growing proportion of older adults, seek health information and diagnoses online," said Julie Robillard, Ph.D., a postdoctoral fellow at the National Core for Neuroethics at the University of British Columbia in Vancouver, British Columbia, Canada, who presented the data at AAIC 2013.
"Self-diagnosis behavior in particular is increasingly popular online, and freely accessible quizzes that call themselves ‘tests' for Alzheimer's are available on the Internet. However, little is known about the scientific validity and reliability of these offerings and ethics-related factors including research and commercial conflict of interest, confidentiality and consent. Frankly, what we found online was distressing and potentially harmful," Robillard added.
According to the Alzheimer's Association 2013 Alzheimer's Disease Facts and Figures report, more than 5 million Americans are living with Alzheimer's disease. By 2050, the number of people with Alzheimer's could reach 13.8 million. Other estimates suggest that number could be high as 16 million.
"The number of people with Alzheimer's is projected to rise significantly as more and more people age into greater risk for developing the disease," said Maria Carrillo, Ph.D., Alzheimer's Association vice president of medical and scientific Relations. "Especially in that context, active promotion of healthy aging is a priority for the Alzheimer's Association, as is the delivery of accurate, reliable and ethical information and services."
Alzheimer's disease is the sixth-leading cause of death in the United States and is the only leading cause of death without a way to prevent, cure or even slow its progression.
Robillard and colleagues at the University of British Columbia used information-mining techniques to retrieve 16 online tests for Alzheimer disease. Unique monthly visitors for the parent sites hosting the online tests ranged from 800 to 8.8 million.
A panel of experts including geriatricians, human-computer interaction specialists, neuropsychologists and neuroethicists reviewed the tests, specifically evaluating the scientific validity and reliability of the assessments, their human-computer interaction features and ethics-related factors. The tests were evaluated on a scale from 1 (very poor) to 10 (excellent).
The researchers found that most of the tests (12 of 16) scored "poor" or "very poor" for overall scientific validity and reliability. These tests "are not useful for the diagnosis of Alzheimer's disease," Robillard said.
All 16 tests scored "poor" or "very poor" on the evaluation criteria for ethical factors. According to Robillard, ethical issues with the tests included overly dense or absent confidentiality and privacy policies, failure to disclose commercial conflicts of interests, failure to meet the stated scope of the test and failure to word the test outcomes in an appropriate and ethical manner.
The majority of tests (10 of the 16) scored "fair" for appropriateness of human-computer interface for an older adult population. According to the researchers, this suggests that the visual aspects of the tests and the motor tasks required would be suitable for older users.
"Freely accessible diagnostic tests that lack scientific validity and conform poorly to guidelines around consent, conflict of interest and other ethical considerations have the potential to harm a vulnerable population and negatively impact their health," Robillard said. "Further evidence and informed policy are needed to promote the greatest benefits from tools and information available on the Internet."
"As many as 80 percent of Internet users, including a growing proportion of older adults, seek health information and diagnoses online," Julie Robillard, a postdoctoral fellow at the National Core for Neuroethics at the University of British Columbia in Canada, said in an Alzheimer's Association news release.
Alzheimer's Society comments on this recent report:
“It is understandable that people sometimes might want to turn to the internet for help if they are worried about their health. But what this research shows once more is that people need to be careful when considering online tests for Alzheimer's. Scientifically unsound tests could potentially give a false diagnosis while offering no emotional support, which could be devastating for the person carrying it out. If people are worried about their memory, or any cognitive problem, it is important that they go and see their doctor. Only then can they get a proper diagnosis which will open the door to information, support and potentially treatments which can enable people to live well with dementia.”
The Pew Research Center estimates that approximately 72 percent of American internet users scour the web for health information at least once a year. But, experts continue to urge caution, reminding people that, in the digital age especially, you can’t believe everything you read.
So, should you stop using the online information on the health-related issues in general, and for Alzheimers, in particular? Do not think so. Just use the following guidelines, when you perform your investigation, self-evaluation, or simply research:
* If it is published online, it is not necessary to be true and valid. Apply critical thinking and healthy skepticism to everything you read.
* Do not limit your research by a single, or even few resources, trying to get as much information on the topic as available.
* Give more weight to the sites, which information is considered as reliable, for example www.alz.org for all Alzheimer’s related issues.
* Taking self-tests for Alzheimer’s signs for yourself or for your family member, please accept the results in adequate proportions. These are not clinical tests, and you should not be worried on a single poor score. Repeat the test again, check other tests as well. If you have any suspicion that your memory indeed degrades, arrange visit to your doctor.
* If you suspect a family member or friend is developing Alzheimer's, take a look at these 10 warning signs of Alzheimer's Disease, put together by the Alzheimer's Association:
1. Memory changes that disrupt daily life
2. Challenges in planning or solving problems
3. Difficulty completing familiar tasks at home, at work, or at leisure
4. Confusion with time or place
5. Trouble understanding visual images and spatial relationships
6. New problems with words in speaking or writing
7. Misplacing things and losing the ability to retrace steps
8. Decreased or poor judgment
9. Withdrawal from work or social activities
10. Changes in mood and personality
If you have questions or need clarification, you may call the Alzheimer's Association's 24-hour hotline at (800) 272-3900.
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