Understanding clinical care and outcomes in adolescents and young adults living with multiple sclerosis: A cross-sectional analysis of invisible disability.

BACKGROUND

Adolescents and young adults (AYAs) with multiple sclerosis (MS) navigate their disease during a critical developmental window. Whilst physical disability is typically low, the impact on age-appropriate educational and vocational milestones is often underestimated. This study characterises clinical care and health-related quality of life (HRQoL) outcomes in an AYA MS cohort, focusing on the cognitive and fatigue burden and its link to vocational stability.

METHODS

This cross-sectional survey recruited people diagnosed with MS aged 25 years or younger at a Queensland tertiary service. Data covered demographics, clinical characteristics, symptom burden, and changes in education or employment since diagnosis. Symptom items, adapted from PedsQL™-analogous frameworks, were scored 0-100 and benchmarked against Australian Bureau of Statistics (ABS) 2025 data. A human capital model estimated the economic impact of reduced employment.

RESULTS

Of 25 eligible patients, 21 responded (84%; 81.8% female). Mean age at diagnosis was 20.3 years; six (28.6%) were diagnosed before age 18. Fatigue (90.5%) and self-reported cognitive dysfunction (81.0%) were most prevalent. Eleven participants (52.4%) reported MS-driven change to work or study-five (23.8%) ceased and six (28.6%) reduced to part-time-with eight (38.1%) reporting increased sick days. Those not in work or study (23.8%) numbered nearly triple the 8% national benchmark. Estimated annual productivity loss for these eleven approached AUD 572,000.

CONCLUSION

Substantial fatigue, cognitive, and emotional burden coexisted with marked vocational instability, despite widespread high-efficacy disease-modifying therapy use. Although the cross-sectional design precludes causal inference, the findings support broadening care to include cognitive screening, fatigue and sleep assessment, and vocational support in AYA MS management.