When you discover that your child has apraxia or any other significant special need, often the quest begins to not only learn about the problem but also to find a way to improve or cure the problem. We hope for a simple solution. Maybe it is out there somewhere. The thought that we can help our child avoid perhaps years of struggle is compelling.
The internet has led the way to vastly more material being available to the public and health care consumers. The validity and credibility of materials published on the internet can vary to an extreme. There are many credible sources and just as many sources that would not be judged as credible. How are parents to make these distinctions?
Treatment programs abound for many of the difficulties experienced by children with apraxia. Marketing on the web has changed the face of advertising and selling. Again, how are parents to judge claims being made on the internet about various treatments and products? What about web sites touting studies that allegedly prove a certain treatment or product works? How are parents to judge the validity of research claims when most have not been trained in the scientific method or have background in judging the quality of scientific evidence? How do parents know if a study that claims positive results was actually a well-designed study? What about claims that are allegedly backed by experts? Who are the experts? Is the organization even a legitimate organization rather than a commercial enterprise?
This article will hopefully offer parents some tools for assessing the quality of information and the claims on health-related web sites. These tools require that parents attempt to make themselves objective in reviewing internet sources and written materials that could very well be designed to sell you! Being objective when ones child is involved is no easy feat. Hopefully, parents can take a step back and evaluate in order to be the fully informed consumers and advocates that children with apraxia need.
Evaluating the Quality of Information on a Web Site
Below are some general issues and key questions to ask yourself as you read health-related web sites.
- What is the source of the information? Institutions and organizations should be named and their logo displayed. Are the sponsors of the web site non-profit organizations and are they registered with the IRS? For example, a registered nonprofit would be described as a 501(c)(3) public charity – the official designation from the IRS. Is the site a commercial web site? Is a single individual behind the web site? Is the site associated with a University or research facility such as the National Institutes of Health? The answers to these questions begin to give us good background information.
- Is the source credible for the type of information you are seeking? Usually, we can trust the authority or expertise of health-related institutions, and/or formal health care organizations or charities. However, because of the level of specialty in the healthcare field, it can be challenging to uncover if an individual source of information, author, etc. is credible for the particular topic you are interested in! The Health Information Technology Institute reminds us that sometimes even healthcare professionals with impressive credentials may extend their reach beyond their area of expertise. To truly understand, it would be important to see disclosure of relevant personal and/or financial connections. Ask yourself if the expert has published literature in the field in which they are said to have expertise. Is the expert affiliated with a known institution (university, hospital, etc.)? If not, what evidence exists that substantiates claims of expertise aside from the web site claims?
- Is there any real or potential conflict of interest? When a sponsor of a web site is selling treatments or products, consumers should view glowing reports of the product as well as unpublished studies as advertisement vs. a balanced presentation of information. The Center for Food Safety and Applied Nutrition suggests that consumers look for disclosure statements and sponsorship information to also assess whether the source of the information has a particular viewpoint that is financially or personally advantageous to them vs. the consumer. Ask yourself who associated with the web site may have something to gain from suggesting one particular point of view over another. Does someone involved profit from sales of products or treatments? If so, it should be clearly stated and parents should understand that the glowing recommendations might be undergirded by the desire to sell products.
- Is the information presented objectively and in a balanced way or is there bias? Bias may be inspired by personal beliefs, intellectual or financial investment in a particular method or treatment. Parents should be cautious of sites that seem to appeal to a belief that a product or treatment works, or have an almost fanatical approach. Even though statements of uncertainty may not be what we want to hear, the inclusion of clear statements suggesting the tentativeness of conclusions or the need for more research in a given area should be taken as reflections of greater objectivity.
- Are there claims of amazing results, secret remedies, miracle cures? Parents may be at a disadvantage in detecting whether or not the content of a web site is accurate. However, we can be alerted to warning signs about content accuracy, especially if you see claims of amazing results, miracle cure or otherwise sensational statements. Also, parents should beware of lengthy lists of diagnoses that can be treated by a particular product or method, as most programs cannot be that wide-ranging.
- Are research claims fully explained? Any clinical or scientific evidence that supports a statement should be clearly presented. Study design, type of study (randomized, blinded, open, etc.), numbers of subjects, results, conclusions and limitations should be discussed in language that a consumer can understand. Have several groups of researchers or even several studies by the same researcher validated the research or substantiated the theory? Has the study been published? Are references for the published study in popularized magazines or books (that anyone can get published in) or in scientific and academic peer-reviewed journals in which other experts in the same field have verified the studys procedures and results independently?
- Are claims backed up by a high degree of evidence? Beware of sites that focus on testimonials or anecdotal stories, the lowest quality of evidence. Compelling stories and testimonials do not represent scientific evidence. They should be viewed for what they are: hopeful stories vs. proof that a product or treatment works.Well-controlled studies using large numbers of participants published in peer-reviewed scientific journals represent the highest quality of scientific. Peer-reviewed studies are referenced by the name or names of authors, dates, article title, journal name, and volume and page numbers.
Where speech-language pathology journals are used as evidence, some of the most highly regarded are those that are published by the American Speech-Language-Hearing Association: Journal of Speech, Language, and Hearing Research; Language, Speech, and Hearing Services in the Schools, and the American Journal of Speech-Language Pathology. There are many other reputable journals as well and you may want to seek guidance about them from your local librarian or your child’s speech-language pathologist.
Reviewing Research Reports
- Original source. When at all possible, go to the original research study as described by the principal investigators. Secondary reports of study results can be biased or may misinterpret the findings described in the original research publication.
- Numbers of Subjects and Subject Recruitment. Pay attention to how many subjects were included in the study. Are the numbers low or was the product or treatment studied in a great number of subjects? The greater the number of subjects, the more weight to the results of the study. Studies with low numbers might be considered pilot studies. There are also well-designed time series studies that use single subjects. In this type of research a baseline of behavior is documented, followed by the response to treatment. This is then replicated over different behaviors, or different subjects. In this case, single subjects studies are well designed with good experimental control.
- Well-controlled Variables. Was there a control group that did not receive the treatment or intervention? The highest quality of research will always use a control group to ensure that some other factor besides the treatment was not the reason for any observed changes. Also, a control group may be used to compare an existing treatment to a new treatment.Did the investigator control variables that could affect treatment outcome, such as the effects of other therapies that are occurring at the same time?
- Subject Selection. Is it clear to you how the subjects were selected? What was the eligibility criterion and does it seem well defined? Well designed studies locate eligible participants from a broad pool of candidates and do not recruit from narrow pools of candidates because of convenience. Sometimes studies may be biased from the start because the researcher did not have or use a clear definition of the diagnosis. When this occurs (and it does!), subjects may be included in the study that actually may not have the condition being studied. It is not difficult to see how the results of a study could be contaminated by poor definition of the group being studied. In addition, if the subjects are very different in their characteristics from your child, the results may not actually be relevant to your concerns.
- Conclusions and Limitations. Does the author of the study describe its limitations? The discussion and conclusion sections of the published paper are where this information is often found. Sometimes study results may be written in such a way as to support the authors original claims vs. report the actual findings. Most legitimate studies indicate what further research needs to be done and some of the limiting factors of both the treatment and the research being reported.
Do study findings verify any other studies that have been conducted or suggest the next step?
Well, the point of the article is this be well informed because this is your child’s life! It will help you with decision-making and choices that you may be called on to make regarding your child and their treatment.
Individual families have their own values and beliefs to hold up against the objective information they are able to collect in order to make the best decisions possible. Information and claims should be able to withstand your critical eye! If not, then one must think seriously about the wisdom of embracing such information and/or placing too much energy into a product, treatment or methodology.
Our article is meant to encourage parents to think and evaluate critically. We are not trying to dissuade families from one treatment or another, one therapy methodology or another. We believe that parents, armed with knowledge, have the capacity to appropriately judge the quality of healthcare information on the internet and its potential use for their child.
Center for Food Safety and Applied Nutrition, US Food and Drug Administration. Tips For the Savvy Supplement User: Making Informed Decisions and Evaluating Information. 2002
Federal Trade Commission. Miracle Health Claims: Add a Dose of Skepticism. 2001.
Grassian, E. Thinking critically about discipline-based world wide web resources. University of California. 2000.
Health Information Technology Institute. Health Summit Working Groups Criteria for Assessing the Quality of Health Information on the Internet: Policy paper. 1998.
National Center for Complementary and Alternative Medicine. Ten Things to Know About Evaluating Medical Resources On the Web.2002
U.S. Food and Drug Administration. Buying Medicine and Medical Products Online: Tips for Consumers. 2002
Wolkow, K. Learning Disability Interventions: Making Sense of the Evidence. Community Health Systems Resource Group, Hospital for Sick Children. 2002.
[This article was reviewed by the following members of CASANAs Professional Advisory Board: Michael Crary, Ph.D., CCC-SLP; David Hammer, M.A., CCC-SLP; Deborah Hayden, M.A., CCC-SLP; Rebecca McCauley, Ph.D., CCC-SLP; Amy Meredith, Ph.D., CCC-SLP; Ruth Stoeckel, M.A., CCC-SLP; Edythe Strand, Ph.D., CCC-SLP; Shelley Velleman, Ph.D.,CCC-SLP]