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

Published:October 05, 2020DOI:



      To quantify the extent and variability of bias introduced when caregivers, or proxies, complete patient-reported outcome measures (PROM) on behalf of stroke patients.


      Cross-sectional survey study conducted between July 2018 and November 2019.


      Ambulatory clinic of a cerebrovascular center or rehabilitation unit.


      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.


      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.


      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.


      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.


      List of abbreviations:

      ANOVA (analysis of variance), CAT (computer adaptive tests), ICC (intraclass correlation coefficient), mRS (modified Rankin scale), PROMIS (Patient Reported Outcome Measurement Information System), PROM (patient-reported outcome measure)
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