Use of the internet by patients and their families to obtain genetics-related information

Objective: To characterize use of the Internet by patients and their families referred to general genetics clinics. Patients and Methods: We developed a survey to assess Internet use among patients visiting urban and rural clinics in Colorado and Wyoming. One hundred eighty-nine surveys were distributed to patients and their family members visiting outpatient general genetics clinics in spring 2000. The 8-page anonymous survey instrument asked about use of the Internet to obtain genetics-related information (GRI). All participants were asked whether a physician or health professional had referred them to the Internet for GRI. Subjects who had previously used the Internet to search for GRI were asked to rate whether they considered the GRI they encountered to be accurate, inaccurate, easy to understand, confusing, or trustworthy. Results: One hundred fifty-seven surveys (83%) were returned (52% urban; 48% rural). Ninety (60%) of 149 respondents were at the clinic for a new-patient visit, and 59 (40%) were follow-up visits. All respondents were older than 17 years; 141 (91%) of 155 respondents were the patient's parent or guardian. Seventy-three (47%) of 155 respondents had searched the Internet for GRI prior to their clinic visit. The patients and families themselves initiated the majority of such efforts; only 8 (5%) of 148 respondents had been referred to a site on the World Wide Web by a physician. Interestingly, 136 (92%) of 147 respondents indicated that they would be likely to visit a Web site that was recommended by a geneticist. The most compelling reasons for searching the Internet for GRI were to get information in layperson's terms (60/131 [46%]); to get information about treatment (16/131 [12%]); and to get information about genetic research (16/131 [12%]). Among respondents who reported visiting GRI Web sites, 24 (41%) of 58 agreed that information was confusing or difficult to understand, 35 (53%) of 66 agreed that information was accurate and trustworthy, and 44 (77%) of 57 agreed that using the Internet was a positive experience. Conclusion: Internet use among patients referred to general genetics clinics and their family members appears to be widespread. Respondents reported that they found some of the information confusing and questioned its accuracy. Referral to Web sites by physicians was reported rarely, although the majority of respondents said they would visit a Web site recommended by a genetics physician. Further studies are needed to establish the accuracy of Internet information and how best to integrate and/or accommodate the data into the genetics clinic.