Magnitude and Variability of Stroke Patient-Proxy Disagreement Across Multiple Health Domains

Objectives: To quantify the extent and variability of bias introduced when caregivers, or proxies, complete patient-reported outcome measures (PROM) on behalf of stroke patients. Design: Cross-sectional survey study conducted between July 2018 and November 2019. Setting: Ambulatory clinic of a cerebrovascular center or rehabilitation unit. Participants: A consecutive sample of stroke patients (N=200) and their proxies who were able and willing to complete PROMs. Proxies completed PROMs as they believed the patient would answer. Interventions: Not applicable. Main Outcome Measures: PROMs included Neuro-QoL cognitive function, PROMIS physical function, social role satisfaction, anxiety, fatigue, pain interference, sleep disturbance, Patient Health Questionnaire-9 translated to PROMIS Depression, and PROMIS Global Health. Results: The study included 200 stroke patients (age, 62.2 +/- 13.3; 41.5% women) and their proxies (age 56.5 +/- 13.9; 70% women, 72% spouses). Proxies reported worse functioning and more symptoms across all PROM domains compared with patients (average difference, 0.3-3.0 T score points). Reliability between dyad responses was moderate across all domains (intraclass correlation coefficients (2,1), 0.49-0.76) and effect sizes were small (d= 0.04-0.35). Cognitive function, anxiety, and depression had the lowest agreement, whereas physical function, pain, and sleep had the highest agreement based on the Bland-Altman method. At the individual level, a large proportion of dyads had meaningfully different scores across domains (range, 40%-57%; dyads differed >5 T score points). Few predictors of disagreement were identified through multinomial regression models. Conclusions: At the aggregate level, small differences were detected between stroke patient-proxy pairs, with lower agreement on more subjective domains. At the individual level, a large proportion of dyads reported meaningfully different scores on all domains, affecting the interpretability of proxy responses on PROMs in a clinical setting. (C) 2020 by the American Congress of Rehabilitation Medicine

Automated summary

The study found that proxies completing patient-reported outcome measures for stroke patients reported worse functioning and more symptoms compared to patients, with lower agreement on more subjective domains. At the individual level, a large proportion of dyads reported meaningfully different scores across all domains, affecting the interpretability of proxy responses on outcome measures in a clinical setting.