The August issue suggests that physicians can play a large role in helping ensure quality information is passed along not only to their colleagues, but to the public via Web sites. The issue also highlights that there are abundant resources available dealing with genetics, but the accuracy and efficiency of utilization of that information is called into question.
Karen Snow, Ph.D., a Mayo Clinic molecular geneticist, writes in an editorial that the Internet can provide information relatively easily and quickly, but one needs to know how to perform efficient searches that deliver current and accurate information. As evidence, she notes that it has been reported that a search on the term "clinical genetics" may return as many as 3 million Web pages.
Education in genetics is part of medical school curricula. But Dr. Snow says, "When we examine the continuing medical education of postgraduate physicians, it is not clear how they will keep abreast of new advances in genetics that impact medicine and sustain that educational effort throughout their careers."
Another concern is how patients access quality genetics information on the Internet. Professional medical organizations may be able to do more to centralize access to patient information and to ensure that the quality and readability of information targeted to patients are appropriate.
"Health professionals will remain the best resource for patients and their families in referring them to Internet information sites that are most appropriate for the specific needs of each patient," says Dr. Snow. Researchers in Colorado analyzing the results of their survey of 157 patients visiting urban and rural clinics in Colorado and Wyoming determined that roughly half the respondents had turned to the Internet as a source of genetic information.
The researchers found that much of the Internet use was initiated by the patients or their families, not the physician. However, many of the survey respondents (92 percent) said they would likely visit a Web site recommended by their physician.
Internet use among patients referred to general genetics clinics and their family members appears to be widespread. Yet, the authors reported that survey respondents found the Web information confusing and questioned its accuracy. Also, the readability of genetics-related information Web sites needs to be improved. The authors note that while they are not aware of studies that speak directly to readability of genetics-related Web sites, available evidence suggests that many health-related Web sites use language that may not be readily comprehensible to the majority of patients.
Authors of the study were Matthew R.G. Taylor, M.D., Amy Alman, B.S., and David K. Manchester, M.D., all of the University of Colorado Health Sciences Center in Denver.
"Given that three of four survey respondents who searched the Web for genetics-related information viewed the experience as a positive one, patient use of the Internet is likely to continue," says Dr. Taylor. "The impact of the Internet on clinical genetics and the practice of medicine in general has not been fully realized, and the response of physicians to Internet-based, patient-oriented medical information remains to be seen."
The authors also argue that carefully selected genetics-related information Web sites may represent a valuable resource to educate patients about genetic conditions.
In another study in this month’s edition of Mayo Clinic Proceedings, researchers in New York found that inner-city pediatric patients with known or suspected genetic disorders are frequently treated in emergency departments.
"Because of the continued increase in clinical genetic knowledge, educational strategies need to be developed for clinicians to incorporate genetic advances into their daily patient diagnosis and management," says Philip F. Giampietro, M.D., Ph.D., of the Department of Pediatrics at Lincoln Medical and Mental Health Center in Bronx, N.Y., and Weill Medical College of Cornell University. "Improved physician awareness may lead to earlier diagnosis in patients with previously undiagnosed genetic conditions and improved management of patients with known disorders."
The study looked at 15,258 pediatric visits to Lincoln Medical and Health Center in Bronx, N.Y., from October 1998 and February 1999. Of those, 2,839 visits were by patients with known or suspected genetic disorders. Most of these visits (97.2 percent) were associated with complaints or diagnoses that suggested the possibility of an underlying genetic disorder requiring further evaluation and diagnostic work-up.
Mechanisms such as Medicaid and community-based health centers help provide access to medical care for poor inner-city families. However, despite these resources, inner-city families often engage in an uncoordinated pattern of seeking primary care, with the emergency department serving as a focal point, the study’s authors write.
Along with Dr. Giampietro, the study’s authors include Pankaj Kumar, M.D., Jolly Radhakrishnan, M.D., and Maksud A. Chowdhary, M.D., of Lincoln Medical and Mental Health Center.
Since the emergency department provides both primary and subspecialty care for many inner-city patients, it is important for emergency physicians and other primary care practitioners to be familiar with common genetic diseases, their acute presentations and complications, the study’s authors write. Timely referral to a genetics clinic may facilitate diagnostic evaluation of suspected genetic disorders and case management strategies.
Mayo Clinic Proceedings is a peer-reviewed and indexed general internal medicine journal, published for 75 years by Mayo Foundation, with a circulation of 130,000 nationally and internationally.
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