Understanding Drivers of Employment Change in a Multiple Sclerosis (MS) Population

Background: Multiple Sclerosis (MS) commonly affects people between the ages of 20–40, which is an important time for adults’ career progression and earning. Although factors affecting MS patient employment status have been described, a paucity of qualitative decision data exists.

Objectives: To understand the key symptoms and factors that lead MS patients to leave the workforce or reduce their working hours.

Methods: Adult MS patients who reported leaving the workforce, reducing their work hours, or changing jobs due to MS within the past 6 months were recruited from 4 US clinical sites. Patients participated in one-on-one semi-structured interviews regarding their MS symptoms and reasons to change their employment status. All interviews were transcribed and coded for descriptive analyses.

Results: 27 adults with the mean age of 46.3 participated. Most participants were white (81.5%) and female (70.4%); nearly half reported being married (48.2%) and having a college degree (44.4%). Participants reported having MS for a mean duration of 10.9 years, with 51.9% reporting Normal, Mild or Moderate disability on the Patient-determined Disease Steps scale, 14.8% reporting gait disability, and 33.3% reporting the need to use a cane or wheelchair. Many participants (n=11, 40.7%) reported being on disability or having applied for disability in the past 6 months. Participants represented a diverse sample with a wide range of occupations and reasons for either leaving the workforce or reducing work were often interconnected. Physical symptoms (e.g., fatigue, muscle weakness, visual deficits, weakness) were the most common reasons (77.8%) cited for employment change, 11 (40.7%) participants reported at least one cognitive symptom (e.g., memory loss, lack of mental agility) as a reason for change. Fatigue emerged as the most pervasive symptom and affected both physical and mental aspects of patients’ jobs. Most participants (85.2%) reported >=2 symptoms as being key drivers for change. Symptoms were not related to a specific type of employment or occupation. Loss of employment had a significant negative impact on patients’ mental status, family life, and financial stability.

Conclusions: Fatigue is the most commonly related symptom associated with an MS patient’s decision to leave work or reduce employment and nearly half of the patients cited at least one cognitive symptom factoring into their decision as well. The negative impact of employment loss should not be underestimated.