A qualitative exploration of the rehabilitation perceptions and experiences of persons with early multiple sclerosis

Abstract

Background: Since the advent of disease-modifying therapies (DMTs), people with MS are living longer. The management of MS requires use of DMTs, symptom management, and prevention for those with access to these aspects of health care. Although DMTs are used as part of early intervention to manage disease pathophysiology in those with MS, physical rehabilitation still focuses on symptomatic management of MS (tertiary prevention) and has not embraced a primary or secondary prevention approach to holistically manage MS. Although rehabilitation has been found to be beneficial for people with MS, there is currently limited information for persons in their early years of MS diagnosis. More importantly there is limited engagement of persons with early MS in rehabilitation care. Thus, the purpose of this study was to elucidate the perceptions of people living with early MS and their overall experiences with physical rehabilitation for MS management.

Methods: The study team used semi-structured interviews to collect qualitative data to ascertain the experiences and perceptions of 15 persons with early MS who were within 5 years of diagnosis (mean age 36.5 ± 10.4 years). Using a phenomenological approach, the researchers sought to understand the lived experiences of 15 people living with early MS. Using inductive thematic analysis, authors coded each interview separately and arrived at themes with consensus.

Results: Our study discovered six main themes and several subthemes offering insight into the lived experiences of the participants. Themes uncovered included: insight to condition, awareness of rehabilitation, resource availability, information seeking, clinician expertise in MS, and therapeutic use of self.

Conclusions: Our study offered a small but poignant glimpse into the lived experiences of people living with early MS. There is still poor public awareness of MS-specific rehabilitation and its benefits for people with early MS. People with early MS seek information about their diagnosis but information and resources that are reliable and easily accessible are still needed, especially from their neurologists, to improve engagement in MS-specific rehabilitation. More research exploring these experiences and more diversity in the participant pool would lead to best practices in physical rehabilitation.

Keywords: Early diagnosis; Exercise; Rehabilitation; Therapy.