Beyond Conventional Health Technologies: Investigating Design Opportunities for Improving Self-management in People with Multiple Sclerosis
Trisha Dani, Anindya Das Antar, Anna Kratz, Nikola Banovic · 2026 · ACM Transactions on Computing in Healthcare · doi:10.1145/3797885
Summary
This qualitative HCI study investigates how people with Multiple Sclerosis (MS) use existing health technologies to manage their symptoms and condition in daily life outside clinical settings. MS is a chronic neurological condition causing fluctuating and often invisible symptoms including fatigue, pain, depression, cognitive impairment (brain fog), and mobility challenges. The researchers conducted remote contextual inquiry sessions with nine clinically diagnosed MS participants (five relapsing-remitting, three primary progressive, one secondary progressive; ages 25-64; six women, three men). Sessions lasted approximately one hour via Zoom. Data was analyzed through interpretation statements, individual flow and sequence diagrams, and affinity diagramming. An MS clinical psychologist co-authored the study, advising on participant selection and session design to minimize fatigue and cognitive overload. The study examined five areas: everyday and situational digital tool use; formal symptom tracking and its breakdowns; self-discovered coping strategies and proactive planning; the role of family caregivers and social support; and community knowledge building through online MS communities. The work explicitly aims to inform design implications for future health technologies that prioritize user-centered self-management over clinician-driven monitoring.
Key findings
Participants overwhelmingly relied on adapted general-purpose tools (phones, calendars, Notes apps, smartwatches, patient portals) rather than specialized MS symptom trackers. Specialized apps like PatientsLikeMe were adopted early after diagnosis but abandoned due to repetitive data entry, lack of actionable feedback, data loss across device changes, and emotional burden. Continuous tracking broke down primarily when clinical feedback loops were disrupted. Participants tracked symptoms mainly to communicate with clinicians; when clinical access declined (especially post-COVID), tracking felt purposeless and emotionally draining. Many described tracking as making them feel worse by constantly focusing on illness. Despite limited clinical guidance, seven of nine participants had independently discovered strategies mirroring clinical concepts such as activity pacing and energy conservation through lived experience and trial and error rather than formal clinical instruction. These strategies emphasized reducing cognitive load, building routines, and maintaining a sense of control and agency. Family caregivers were essential but created communication burden. Online MS peer communities provided experiential knowledge, emotional validation, and practical strategies that clinical settings could not. Six design implications were derived: minimize input effort while maximizing useful output; frame feedback positively to maintain motivation and self-image; support self-reflection and agency without requiring clinical involvement; provide active and timely feedback; integrate caregiver support into tool design; and distinguish MS-specific constraints from generalizable chronic condition design patterns.
Relevance
This paper provides a rich evidence base for designing health technologies for people with fluctuating, episodic, and cognitively demanding chronic conditions. The central finding that users abandon purpose-built health apps in favour of adapted general-purpose tools is a direct indictment of design approaches that prioritize data completeness over usability and emotional sustainability. For accessibility practitioners, the most transferable insights are: tools must reduce rather than add cognitive load; clinical language and deficit-framing in feedback actively harms engagement; and self-efficacy is as important a design goal as clinical data accuracy. The emphasis on positive, stability-oriented feedback aligns with broader accessibility principles around inclusive, non-stigmatizing design. The study underscores that chronic condition design cannot be generalized uncritically from one condition to another. Limitations include a small US-based sample from a single region, limited demographic diversity, and the cross-sectional nature of single-session contextual inquiry.
Tags: multiple sclerosis · self-management · chronic illness · telehealth · symptom tracking · self-efficacy · contextual inquiry · qualitative research · cognitive load · fatigue · activity pacing