Quality of life in individuals newly diagnosed with multiple sclerosis or clinically isolated syndrome

Abstract

Background Little is known about quality of life (QOL) at the time of multiple sclerosis (MS) or clinically isolated syndrome (CIS) diagnosis and how it evolves in the critical adjustment period immediately following a new diagnosis. Objectives To (1) describe QOL trajectory in the first year post-MS/CIS diagnosis and (2) examine associations of demographic and biopsychosocial factors with QOL at baseline and as it evolves over the first year post-MS/CIS diagnosis. Methods Participants were N = 250 individuals newly diagnosed with MS or CIS. Participants completed self-report assessments of QOL, demographics, and biopsychosocial factors at 1, 2, 3, 6, 9, and 12 months post-diagnosis using validated measures.Results At 1-month post-diagnosis, QOL M = 75.2/100 with subsequent assessments revealing consistent ratings on average. Modelling revealed a small number of variables that were predictive of QOL at baseline and/or change in QOL over time. Conclusion QOL in the first year post-MS/CIS diagnosis was, on average, high and stable. A subset of modifiable factors across the biopsychosocial spectrum was associated with baseline level of QOL and change in QOL over time. The stability in QOL suggests that patients can be assessed early after diagnosis for key variables that are predictive of both current and future QOL.

Self-efficacy trajectories of individuals newly diagnosed with multiple sclerosis.

“…This study is a secondary analysis of a prospective observational study of QOL (Alschuler et al, 2022) and symptom trajectories (Valentine et al, 2022) in the first year following a diagnosis of MS or CIS. Below we report how we determined our sample size, all data exclusions (if any), all manipulations, and all measures used in this secondary study.…”

“…Study procedures were approved by the University of MASKED Human Subjects Division. Participants were enrolled from June 2014 to April 2018 into a prospective longitudinal observational study of QOL in the year following MS/CIS diagnosis (Alschuler et al, 2022). Healthcare providers at the Multiple Sclerosis Centers of the University of MASKED and the MASKED, both in MASKED, recruited participants during clinic visits.…”

“…MS is a chronic, progressive, neurological disease affecting nearly 1 million adults in the United States (Wallin et al, 2019). People living with MS experience a diverse set of physical, psychological, and cognitive symptoms that present with intraindividual and interindividual variability, any combination of which can impact the quality of life (QOL; Alschuler et al, 2022). The period after an MS diagnosis is likely a critical time for adapting to life with MS, as individuals learn to live with and manage the disease and its symptoms.…”