“I'm walking into the unknown”: Qualitative insights into how emotions and lived experience related to multiple sclerosis diagnosis impact on decisions to pursue disease modifying treatment

• Published in: Multiple sclerosis and related disorders 2022-02, Vol.58, p.103464-103464, Article 103464
• Main Authors: Carey, Gina, Wilson, Neil, Janssen, Jessie, Chohan, Ambreen, Rog, David, Roddam, Hazel
• Format: Article
• Language: English
• Subjects: Disease modifying treatment; Emotions; Humans; Multiple Sclerosis; Multiple Sclerosis, Relapsing-Remitting - diagnosis; Multiple Sclerosis, Relapsing-Remitting - psychology; Multiple Sclerosis, Relapsing-Remitting - therapy; Qualitative research; Relapsing remitting; State Medicine; Treatment decision; Walking
• ISSN: 2211-0348; 2211-0356
• DOI: 10.1016/j.msard.2021.103464

•MS patients experienced fear, loss of control and hopelessness at diagnosis.•Choosing disease modifying treatments was accompanied by fear and uncertainty.•Treatment decisions gave opportunity to increase hope, control, and acceptance.•Treatment choices were motivated by a desire for normality.•Patients were concerned about future employment and family planning. People with Relapsing Remitting Multiple Sclerosis (RRMS) are increasingly included as active participants in shared decision making around their treatment options. Choosing a first disease modifying treatment (DMT) is a complex process that often takes place soon after a diagnosis has been given. Patients therefore are often required to make difficult decisions at a time when they are still coming to terms with their illness. This study investigated the views and experiences of recently diagnosed patients with RRMS when they were making their initial DMT choice. This was a qualitative study involving in-depth semi-structured interviews with patients with RRMS in a National Health Service (NHS) setting in the United Kingdom. Data were collected from 6 patients and analysis was guided by an Interpretive Phenomenological Analysis (IPA) approach. Initial reactions to diagnosis were characterized by strong emotions and a feeling of despair and hopelessness. Subsequently the DMT decision was shaped by multiple considerations around maintaining normality, and restoring hope and control over one's life whilst reconciling uncertainty around efficacy. Considering the future with a DMT elicited reflections around employment and family planning. Emotions and lived experience related to recent MS diagnosis can impact on the initial DMT decision in number of ways. Health care professionals need to understand the lived experience of patients making DMT decisions soon after diagnosis when engaging in shared decision making.