People with Multiple Sclerosis (MS) who can self-track and self-manage their symptoms and condition are more likely to stay active and independent. Although existing health technologies could support people with MS outside of clinical settings (e.g., through remote consultations, symptom tracking), care remains largely clinician- or caregiver-driven. To understand how people with MS use existing health technologies to track and manage their symptoms and condition, we conducted a remote contextual inquiry with nine participants with MS. Our findings show that while limited access to clinicians creates opportunities for telehealth tools, few participants used existing conventional health tools specifically designed for tracking symptoms, monitoring disease progression, or managing functioning. Instead, they adapted a mix of analog and digital technologies to implement self-driven strategies that reduced cognitive load, maintained positivity, and supported self-image. Our insights inform the design of future health technologies that prioritize self-management strategies, such as self-reflection, self-care, and intentional guidance, to address MS-related symptoms, mitigate social isolation, and enhance self-efficacy.
Dani et al. (Tue,) studied this question.