Women’s Experiences of Managing Relapsing-Remitting Multiple Sclerosis with Disease Modifying Drugs: A Dissertation

Abstract

Purpose: To describe the experience of managing relapsing-remitting multiple sclerosis among adult women users of injectable disease modifying drugs, including day-to-day management, medication beliefs, and health care provider influence. Rationale/Significance of the study:Approximately 85% of the 400,000 Americans with multiple sclerosis have relapsing-remitting multiple sclerosis (RRMS), characterized by unpredictable relapses and partial or full remissions of neurological symptoms. Untreated, RRMS may progress to permanent, irreversible disability and decreased quality of life. Current guidelines recommend immediate and sustained treatment with injectable disease modifying drugs (DMDs). However, despite pronounced modest benefits, approximately 30%-62% of patients are not undergoing DMD therapy. A small number of quantitative studies have identified factors that predict adherence to injectable DMDs. However, little is known about injectable DMDs from patients’ perspectives. It is important to develop an understanding of the experience of managing RRMS among adult users of injectable DMDs in order for health care providers to provide ongoing education, counseling, and support. Organizing Framework:The framework, Beliefs About Medicines, was used to guide the study. Design: Qualitative descriptive design. Setting: Data were collected from adult women with RRMS who received care from an MS clinic, a neurology practice, and through snowball sampling. Sample: Purposive and theoretical sampling was used to recruit 32 women with RRMS. Maximum variation sampling ensured the appropriate breadth and depth of experiences. Women currently undergoing injectable DMD therapy (n = 25), as well as women who either discontinued (n = 6), or never used (n = 1) injectable DMDs were interviewed. Methods: A qualitative descriptive design was utilized. Verification occurred through trustworthiness of data, including rich, thick description from qualitative interviews; field notes and memoing; and member checks. Simultaneous data collection, analysis, and interpretation facilitated interview revision in order to elicit or expand emerging themes. Content analysis inductively derived themes and patterns within and across categories. Participant quotes substantiated particular themes. Confirmability of the data analysis process was undertaken in consultation with the research advisor. Implications: Findings elucidated adult women’s subjective experiences concerning management of RRMS among users of DMDs, including day-to-day management, medication beliefs, and health care provider influence. Results from this study can be used to educate, counsel, and support women in the management of RRMS.