Patient-reported outcomes after stroke in young adults: University College London (UCL) Young Stroke Systematic Evaluation Study (ULYSSES)

BACKGROUND: Few studies have investigated patient-reported non-motor outcomes after stroke in young adults. We aimed to assess their prevalence and patterns in this population to identify unmet needs. METHODS: This prospective cohort study included consecutive patients (aged <55) admitted to University College London (UCL) Hospitals Hyperacute Stroke Unit with ischaemic stroke or intracerebral haemorrhage (ICH) between 2017 and 2020. At 6 months, we collected data on eight non-motor domains (anxiety, depression, fatigue, sleep disturbance, pain interference, reduced social participation, bowel and bladder dysfunction). We assessed outcome co-occurrence, compared prevalence by modified Rankin Scale (mRS) score (favourable: 0-1 versus unfavourable: 2-5), and performed multivariable logistic regression to identify predictors of each adverse outcome and high non-motor outcome burden (≥3 adverse outcomes). RESULTS: We included 493/527 (94%) eligible patients (median age 48, IQR 41-52; 33% female; 82% ischaemic stroke). Fatigue (55%) reduced social participation (47%) and sleep disturbance (46%) were most common. Prevalence rates did not differ significantly by mRS score. 91% reported ≥1 adverse outcome; 27% reported ≥4. Anxiety was predicted by ICH (OR 1.92; 95% CI 1.11 to 3.33; p=0.019) and higher education levels (per decile increase in education deprivation, OR 1.12; 95% CI 1.03 to 1.22; p=0.012). Pain interference was predicted by admission stroke severity (per National Institutes of Health Stroke Scale 10-point increase, OR 1.54; 95% CI 1.05 to 2.25; p=0.025). CONCLUSIONS: Adverse non-motor outcomes are common in young adults 6 months post-stroke, even in those with an mRS score of 0-1 (indicating a favourable functional recovery). Furthermore, non-motor outcomes rarely occur in isolation, highlighting the need for early and comprehensive screening, recognition and management.