Patient- and proxy-perceptions on functioning after stroke rehabilitation using the 12-item WHODAS 2.0: a longitudinal cohort study

Abstract

Purpose To analyse longitudinally patient- and proxy-perceptions on stroke survivors’(SSs’) functioning using the 12-item WHO Disability Assessment Schedule 2.0 (WHODAS) after subacute inpatient stroke rehabilitation. Methods Sixty-five SSs and their significant others(proxies) responded to WHODAS questionnaire at discharge and 9 to 50 months later. Self-WHODAS ratings were compared with corresponding proxy-perceptions and informal ratings on self-reported functional recovery. Results On average, SSs’ functioning improved after discharge, except according to self-WHODAS ratings of those with severe stroke. Individual changes were, however, notable. Association between time and change was statistically insignificant. SSs perceived greatest improvements in walking, household tasks, community life and working ability. The only items showing slight deterioration were emotions and relationships. In parallel, proxies rated all items except emotions and relationships improved. At discharge, proxies rated SSs’ functioning more impaired than SSs themselves, mostly regarding those with severe stroke. Still, inter-rater reliability was very strong and increased significantly with time (ICC 0.799 vs. 0.979 at follow-up). Ninety percent of SSs with improved functioning according to self-WHODAS reported better functioning also in the informal questionnaire. Conclusion WHODAS showed improvements in SSs’ functioning 9-50 months after discharge from subacute stroke rehabilitation. Improvements were in line with proxy-perception and self-reported functional recovery. IMPLICATIONS FOR REHABILITATION Stroke survivors’ functioning improved significantly during the 9-50 months follow-up after subacute inpatient stroke rehabilitation. Stroke survivors perceived slightly less difficulties in their functioning compared to evaluations by proxies. Strong correlation between patient- and proxy-perceptions on stroke survivors’ functioning strengthened from subacute to chronic phase of stroke recovery. The 12-item WHODAS 2.0 seems to be a valuable patient- and proxy-reported outcome measure to assess longitudinal changes in stroke survivors’ functioning after stroke.