Information-Seeking Strategies of People with Multiple Sclerosis in Spain: The INFOSEEK-MS Study

Abstract

Purpose: 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 patients' 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 (R 2 = 0.07), EDSS (R 2 = 0.14), MSIS-29 physical and psychological components (R 2 = 0.132) and inversely with depression (R 2 = 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.

What would improve MS clinic services for cognition? – A stakeholder panel and survey exploration

“…It is recognised that younger PwMS are more receptive to online technology, perhaps side lining older PwMS, and physical disabilities in the domains of vision and hand function may also restrict use of smartphone and other materials (Haase et al, 2021). Also, PwMS with lower SDMT scores do not use the internet (Higueras et al, 2022). Education interventions for PwMS may also have limited usefulness (Arienti, 2020).…”

The Empowering Role of Web-Based Help Seeking on Depressive Symptoms: Systematic Review and Meta-analysis

“…The meaningfulness of web-based health information was operationalized as an additional "know how" and was related to a better understanding of the illness and treatment options [21,[81][82][83][84]92,97,120], primarily resulting from the web-based social support offered by digital communities [93,98,99]. In addition, self-efficacy was investigated in terms of a perceived enhanced ability to manage the illness and related symptoms [21,80,81,[83][84][85]92,97,120] or a better ability to discuss topics [83]. Overall, web-based help seeking boosted the participants' self-efficacy.…”

“…In addition, in a WeChat professionally facilitated support group, community management was considered good or very good [84]. Only in 1 study about multiple sclerosis, the reliability of website information was considered problematic according to the participants [85].…”

“…A total of 17% (8/48) of studies assessed the general use of the internet in terms of website consultations [21,65,73,77,85,87,88,118,129]. To address web-based help-seeking behavior, most (5/8, 62%) studies used a single-item measure, such as "Have you ever used internet for seeking health information?"…”

“…To address web-based help-seeking behavior, most (5/8, 62%) studies used a single-item measure, such as "Have you ever used internet for seeking health information?" [21,77,85,87,88]. One study used a 5-point scale to investigate preferences for mental health support [73], and another looked at the type of information searched (eg, symptoms, treatment, or suicide) [65].…”