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Yolanda Higueras,1 Elisa Salas,2 Virginia Meca-Lallana,3 Pedro Carrascal Rueda,4 Ofir RodrÃguez De la Fuente,5 Rosana Cabello-Moruno,2 Jorge Maurino,2 Miguel Ãngel Ruiz DÃaz6 1Department of Neurology, Instituto de Investigación Sanitaria Gregorio Marañón, Madrid, Spain; 2Medical Department, Roche Pharma, Madrid, Spain; 3Department of Neurology, Hospital Universitario La Princesa, Madrid, Spain; 4Esclerosis Múltiple España, Madrid, Spain; 5Department of Neurology, Hospital Universitario Puerta de Hierro, Madrid, Spain; 6Universidad Autónoma de Madrid, Madrid, SpainCorrespondence: Elisa SalasMedical Department, Roche Pharma, Calle Ribera del Loira, 50, Madrid, 28042, SpainTel +34 913248173Email elisa.salas@roche.comPurpose: Patients with multiple sclerosis (MS) are increasingly demanding access to reliable information regarding their disease. The objective of the INFOSEEK-MS study was to assess what are the strategies people with MS use when searching for information on their disease, including sources, frequency, reliability, and preferred content.Patients and Methods: A non-interventional, cross-sectional study was conducted. Patients with a diagnosis of MS according to the 2010 McDonald criteria were included. The InfoSeek questionnaire was used to assess patientsâ strategies when seeking information about the disease. Clinical characteristics and other variables, including disability, quality of life, fatigue, cognition, anxiety and depression, were analysed using the Expanded Disability Status Scale (EDSS), Multiple Sclerosis Impact Scale (MSIS-29), 5-item Modified Fatigue Scale (MFIS-5), Symbol Digit Modalities Test (SDMT), and Hospital Anxiety and Depression Scale (HADS), respectively.Results: Three hundred and two patients were studied (mean age: 42.3 ± 10 years, 64% female, mean disease duration: 9.6 ± 7.0 years, 90% with relapsing-remitting MS, and mean EDSS score: 2.6 ± 1.9). The internet (either via mobile or computer) is a frequently reported source of information. Lifestyle-related information (67.2%), research and emerging treatments (63.6%), symptom control (49.7%), sharing experiences with other patients (46.4%), and disease prognosis (46.4%) were the most searched topics. Neurologists and nurses were the most trusted source of information. Younger patients and higher SDMT scores were associated with all search resources (M = 37.7 and M = 49.97, respectively). The frequency of searches was related to the number of relapses (R2 = 0.07), EDSS (R2 = 0.14), MSIS-29 physical and psychological components (R2 = 0.132) and inversely with depression (R2 = 0.132).Conclusion: Although healthcare professionals are considered the most reliable source of information for people with MS, searching for information on the Internet is very frequent. An individualized information strategy considering the different factors involved is needed.Keywords: multiple sclerosis, information sources, internet, quality of life, healthcare professionals |
