EDUCATIONAL MATERIAL ABOUT GENETIC TESTS - DOES IT PROVIDE KEY INFORMATION FOR PATIENTS AND PRACTITIONERS

Genetic testing for common conditions will be used increasingly in pri mary care, but resources for patient counseling are decreasing, It is also necessary that primary care practitioners be better equipped to d o basic genetic counseling. Therefore, the quality of informational ma terials far practitioners and patients is important. It was unknown ho w often key elements recommended by policy groups were actually includ ed in such material. It was our aim to determine the content of printe d informational material for practitioners and patients on genetic tes ting We performed (1) a telephone survey of organizations in the Unite d States that developed genetic tests or services and (2) a content an alysis of pamphlets obtained hom these organizations to determine the presence of 10 critical elements necessary to evaluate the appropriate ness and performance of the tests, Almost 95% (169/178) of organizatio ns responded to our survey; 131/169 (75%) reported using informational materials, We analyzed 115 pamphlets collected from 125/131 (95%) org anizations, Elements least frequently included in the pamphlets were r isks and benefits, patient rights, and intended use or purpose of the test, Most. frequently included were descriptions of the conditions de tected by the test, and the appropriate patients for testing, Nearly o ne half of the pamphlets included some statement about the accuracy of the test, but most of these did not specify whether their statements referred to sensitivity, specificity, or predictive value, Overall pam phlets tended to contain information that would aid in determining a p atient's eligibility for a genetic test, brat did not contain sufficie nt information about the tests themselves. Our results suggest that se veral critical elements need to be added to enhance informed choices b y patients and physicians. (C) 1997 Wiley-Liss, Inc.