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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.
Hay et al. (Sat,) studied this question.