Background: Community participation and engagement are core determinants of health and well-being. Despite this, stroke rehabilitation continues to focus on functional independence, with little focus on community re-integration.
Aims: To identify factors affecting health related quality of life (HRQoL) after severe stroke in working age adults, with particular focus on participation, self-care, mobility, cognition, communication and continence.
Methods: This longitudinal study was conducted with the OutcomeABI, a severe, mixed-brain injury cohort. Participants’ data were included if they had experienced a stroke, were of working age (18-67 years inclusive) and had complete a 2-year follow-up assessment. Standardised assessments were administered at discharge and 2-years post-stroke included: EQ-5Dvisual analogue scale (HRQoL), Functional Independence Measure, Functional Autonomy Measurement System subscales (mobility, cognition, communication and continence), and Mayo-Portland Adaptability Inventory (participation).
Results: 28 participants were included, with a mean age of 48 years (SD 12.7). The average length of stay in inpatient rehabilitation was 156 days (SD 85). At discharge 68% experienced hemiplegia and 39% experienced aphasia. Most were living in the community at 2 years (although 29% experienced a change in accommodation post-discharge). On discharge, 21% described themselves as unemployed / not looking for work, but at 2 years this had increased to 83%. 2-year HRQoL was best predicted by a person’s participation levels (βa -.651, 95% CI -3.216 to -0.419, p=.013), while functional independence and individual clinical abilities (such as mobility) were not associated. The overall model explained 26% of variance in EQ5Dvisual analogue scale scores. Findings suggest that participation in meaningful activities has a stronger association with HRQoL than functional independence in working-age stroke survivors.
Conclusion: This study extends the importance of improving community participation to enhance long-term HRQoL up to 2-years post-stroke and consistent with earlier research, suggests a need to both evaluate and support HRQoL after young stroke.