Multiple sclerosis (MS) is a chronic inflammatory and degenerative disease of the central nervous system, leading to myelin and axonal damage. It typically manifests in early adulthood, most commonly during the third decade of life (Reich et al., 2018). Research indicates that individuals with MS actively seek to play an autonomous role in the decision-making process regarding their treatment and care (Heesen et al., 2004; Cofield et al., 2017). In response, clinical guidelines for MS management have emphasized the importance of providing adequate information and fostering patient participation in decision-making (Montalban et al., 2018; NCC-CC, 2004). This has led to the establishment of a ‘good practice’ code to support informed decision-making (EMSP, 2007). With the increasing availability of treatment options for MS, ensuring that patients have access to clear, high-quality information is more critical than ever. In this regard, a Cochrane systematic review (Köpke et al., 2018) evaluated the effectiveness of various information strategies. Understanding which tools provide reliable and comprehensive information—starting from diagnosis—is essential to support individuals with MS in making informed choices about their disease course.
Information Needs of People with Multiple Sclerosis: A Scoping Review Protocol
Gianluca Catania;Matilde Inglese;Mariarosaria Gammone;Annamaria Bagnasco
2025-01-01
Abstract
Multiple sclerosis (MS) is a chronic inflammatory and degenerative disease of the central nervous system, leading to myelin and axonal damage. It typically manifests in early adulthood, most commonly during the third decade of life (Reich et al., 2018). Research indicates that individuals with MS actively seek to play an autonomous role in the decision-making process regarding their treatment and care (Heesen et al., 2004; Cofield et al., 2017). In response, clinical guidelines for MS management have emphasized the importance of providing adequate information and fostering patient participation in decision-making (Montalban et al., 2018; NCC-CC, 2004). This has led to the establishment of a ‘good practice’ code to support informed decision-making (EMSP, 2007). With the increasing availability of treatment options for MS, ensuring that patients have access to clear, high-quality information is more critical than ever. In this regard, a Cochrane systematic review (Köpke et al., 2018) evaluated the effectiveness of various information strategies. Understanding which tools provide reliable and comprehensive information—starting from diagnosis—is essential to support individuals with MS in making informed choices about their disease course.
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