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Adherence to patient preference. Jan 11, 2022;4:51-60 p.m. doi: 10.2147/PPA.S344690. eCollection 2022.
OBJECTIVE: Patients with multiple sclerosis (MS) are increasingly demanding access to reliable information about their disease. The objective of the INFOSEEK-MS study was to assess what strategies people with MS use when seeking information about 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 McDonald 2010 criteria were included. The InfoSeek questionnaire was used to assess patients’ strategies when seeking disease information. Clinical characteristics and other variables, including disability, quality of life, fatigue, cognition, anxiety, and depression, were analyzed using the Expanded Disability Status Scale (EDSS). ), the Multiple Sclerosis Impact Scale (MSIS-29), the Modified 5-Item Fatigue Scale (MFIS-5), the Symbol Digits Modality Test (SDMT), and the 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 MS and mean EDSS score : 2.6 ± 1.9). The internet (whether via mobile or computer) is a frequently cited source of information. Lifestyle 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 reliable source of information. Younger patients and higher SDMT scores were associated with all research 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 conversely with depression (R2 = 0.132).
CONCLUSION: Although healthcare professionals are considered the most trusted source of information for people with MS, searching for information on the Internet is very common. An individualized information strategy taking into account the various factors involved is necessary.