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Why Patients Go Online: Multiple Sclerosis, the Internet, and Physician-Patient Communication

Hay, M Cameron PhD*†; Strathmann, Cynthia PhD; Lieber, Eli PhD§; Wick, Kimberly MA; Giesser, Barbara MD

doi: 10.1097/NRL.0b013e31817709bb
Original Article
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Background: The online information seeking of multiple sclerosis (MS) patients, their reasons for doing so, and its importance for physician-patient communication have not been described.

Methods: Patients (n = 61) presenting for the first time at an MS clinic from December 2003 to July 2005 were interviewed pre- and postappointment and administered standard measures of pain and health quality of life. Consultations were audio recorded. Quantitative data were analyzed in light of qualitative data.

Results: Eighty-two percent of patients reported gathering medical information online before their first appointment; 36% discussed this information with their physician. Qualitative reasons for Internet information seeking and for not communicating it show some signs of wariness of health care potentially leading to nonadherence.

Conclusions: Most MS patients are informed by online information, but are unlikely to discuss that research with physicians for reasons that may have implications for patient adherence.

From the *Department of Anthropology, Miami University, Oxford, Ohio; †Center for Culture and Health, University of California, Los Angeles, CA; ‡Division of Occupational Science and Occupational Therapy, University of Southern California, Los Angeles, CA; §Fieldwork and Qualitative Data Research Laboratory, Center for Culture and Health, University of California, Los Angeles, California; ¶Boston College, Boston, MA; and ∥Department of Neurology, University of California, Los Angeles, California.

Supported in part by a Pilot Research Award from the National Multiple Sclerosis Society and by the National Science Foundation under grant No. 0137921.

Reprints: M. Cameron Hay, PhD, Department of Anthropology, 164 Upham Hall, Miami University, Oxford, OH 45056. E-mail: hayrolmc@muohio.edu or mchay@ucla.edu.

© 2008 Lippincott Williams & Wilkins, Inc.