Investigating changes in quality-of-life after high-dose high-intensity upper limb rehabilitation in chronic stroke survivors: A mixed-methods analysis of the Queen Square Programme

Abstract

Objective: To evaluate changes in quality-of-life and explore psychosocial influences on social participation and recovery in chronic stroke survivors following intensive upper limb neurorehabilitation. Design: Mixed-methods design with quantitative (pre-post design with follow-up) and qualitative (semi-structured interview) phases. Setting: Three-week Queen Square upper limb neurorehabilitation programme. Participants: 65 stroke survivors who participated in the programme from July 2016 to March 2018. Main measures: Stroke Impact Scale (3.0) (SIS) and Action Research Arm Test, collected on admission, discharge, 6-week and 6-month follow-up (n = 65). Beliefs and psychosocial factors influencing quality-of-life were investigated through thematic analysis of semi-structured interviews in two subgroups, based whether the SIS-participation domain change from admission to follow-up was high (> 20, n = 5) or low ( < 0.001) and Action Research Arm Test (p < 0.001) improved from admission to discharge. The emotion domain improved from admission to discharge (p < 0.001) and reduced from discharge to 6-month follow-up (p < 0.001). Interviews highlighted four key psychosocial themes with contrasting positive and negative perspectives between higher change and lower change groups; themes ‘hidden negative effects’ and ‘loneliness’ were evident in the lower change group and ‘getting on with my life’ in the higher change group. Conclusion: The Queen Square upper limb neurorehabilitation programme led to measurable therapeutic benefits on physical and non-physical quality-of-life outcomes. However, the lack of sustained improvement in self-reported emotion contrasts with the clear benefits in other domains. This indicates a need for ongoing psychosocial support for some stroke survivors, supported by the qualitative findings.