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

Yolanda Higueras; Elisa Salas; Virginia Meca-Lallana; Pedro Carrascal Rueda; Ofir Rodríguez De la Fuente; Rosana Cabello-Moruno; Jorge Maurino; Miguel Ángel Ruiz Díaz

doi:10.2147/PPA.S344690

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

Patient Prefer Adherence. 2022 Jan 11:16:51-60. doi: 10.2147/PPA.S344690. eCollection 2022.

Authors

Yolanda Higueras¹, Elisa Salas², Virginia Meca-Lallana³, Pedro Carrascal Rueda⁴, Ofir Rodríguez De la Fuente⁵, Rosana Cabello-Moruno², Jorge Maurino², Miguel Ángel Ruiz Díaz⁶

Affiliations

¹ Department of Neurology, Instituto de Investigación Sanitaria Gregorio Marañón, Madrid, Spain.
² Medical Department, Roche Pharma, Madrid, Spain.
³ Department of Neurology, Hospital Universitario La Princesa, Madrid, Spain.
⁴ Esclerosis Múltiple España, Madrid, Spain.
⁵ Department of Neurology, Hospital Universitario Puerta de Hierro, Madrid, Spain.
⁶ Universidad Autónoma de Madrid, Madrid, Spain.

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 (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: healthcare professionals; information sources; internet; multiple sclerosis; quality of life.

Grants and funding

This study was funded by Roche Pharma Medical Department, Spain.