Brittany R Lapin1,2, Nicolas R Thompson3,4, Andrew Schuster4, Ryan Honomichl3,4, Irene L Katzan4. 1. Quantitative Health Sciences, Lerner Research Institute, Cleveland Clinic, 9500 Euclid Avenue, JJ3-603,, Cleveland, OH, 44195, USA. LapinB@ccf.org. 2. Center for Outcomes Research & Evaluation, Cerebrovascular Center, Neurological Institute, Cleveland Clinic, Cleveland, OH, USA. LapinB@ccf.org. 3. Quantitative Health Sciences, Lerner Research Institute, Cleveland Clinic, 9500 Euclid Avenue, JJ3-603,, Cleveland, OH, 44195, USA. 4. Center for Outcomes Research & Evaluation, Cerebrovascular Center, Neurological Institute, Cleveland Clinic, Cleveland, OH, USA.
Abstract
PURPOSE: Caregivers, or proxies, often complete patient-reported outcome measures (PROMs) on behalf of patients with stroke. The objective of our study was to assess the validity and responsiveness of proxy-responses compared to patient-responses across multiple domains of health. METHODS: Stroke patients and their proxies were recruited to complete PROMs between 7/2018-11/2019. PROMs included Neuro-QoL cognitive function, PROMIS physical function, satisfaction with social roles, anxiety, fatigue, pain interference, sleep disturbance, Global Health, and PHQ-9. Internal consistency and convergent validity were compared between patient- and proxy-reported measures. Known-groups validity was assessed across levels of stroke disability. Internal responsiveness was evaluated using paired t-tests for a subset of patients who attended rehabilitation following stroke. Analyses were stratified by patients ≤ 3 vs > 3 months from stroke. RESULTS: This cross-sectional study included 200 stroke patients (age 62.2 ± 13.3, 41.5% female) and their proxies (age 56.5 ± 13.9, 70% female, 72% spouses). PROMs had high internal consistency and were significantly correlated for patients and proxies. Patient- and proxy-reported measures worsened with increasing stroke disability. For 34 (17%) patients who attended rehabilitation, patients self-reported improvement on 5 domains whereas proxies reported no improvement. Compared to patient self-reports, validity was worse for proxy-reports on patients ≤ 3 months but better > 3 months from stroke. CONCLUSIONS: Both patient- and proxy-reported PROMs demonstrated strong validity. Only patient-reported PROMs were responsive to change, and proxies had worse validity for patients ≤ 3 months from stroke but better validity for patients > 3 months from stroke. These findings justify the utilization of proxy responses in stroke patients > 3 months from stroke.
PURPOSE: Caregivers, or proxies, often complete patient-reported outcome measures (PROMs) on behalf of patients with stroke. The objective of our study was to assess the validity and responsiveness of proxy-responses compared to patient-responses across multiple domains of health. METHODS: Stroke patients and their proxies were recruited to complete PROMs between 7/2018-11/2019. PROMs included Neuro-QoL cognitive function, PROMIS physical function, satisfaction with social roles, anxiety, fatigue, pain interference, sleep disturbance, Global Health, and PHQ-9. Internal consistency and convergent validity were compared between patient- and proxy-reported measures. Known-groups validity was assessed across levels of stroke disability. Internal responsiveness was evaluated using paired t-tests for a subset of patients who attended rehabilitation following stroke. Analyses were stratified by patients ≤ 3 vs > 3 months from stroke. RESULTS: This cross-sectional study included 200 stroke patients (age 62.2 ± 13.3, 41.5% female) and their proxies (age 56.5 ± 13.9, 70% female, 72% spouses). PROMs had high internal consistency and were significantly correlated for patients and proxies. Patient- and proxy-reported measures worsened with increasing stroke disability. For 34 (17%) patients who attended rehabilitation, patients self-reported improvement on 5 domains whereas proxies reported no improvement. Compared to patient self-reports, validity was worse for proxy-reports on patients ≤ 3 months but better > 3 months from stroke. CONCLUSIONS: Both patient- and proxy-reported PROMs demonstrated strong validity. Only patient-reported PROMs were responsive to change, and proxies had worse validity for patients ≤ 3 months from stroke but better validity for patients > 3 months from stroke. These findings justify the utilization of proxy responses in stroke patients > 3 months from stroke.
Authors: David Cella; William Riley; Arthur Stone; Nan Rothrock; Bryce Reeve; Susan Yount; Dagmar Amtmann; Rita Bode; Daniel Buysse; Seung Choi; Karon Cook; Robert Devellis; Darren DeWalt; James F Fries; Richard Gershon; Elizabeth A Hahn; Jin-Shei Lai; Paul Pilkonis; Dennis Revicki; Matthias Rose; Kevin Weinfurt; Ron Hays Journal: J Clin Epidemiol Date: 2010-08-04 Impact factor: 6.437
Authors: D Cella; J-S Lai; C J Nowinski; D Victorson; A Peterman; D Miller; F Bethoux; A Heinemann; S Rubin; J E Cavazos; A T Reder; R Sufit; T Simuni; G L Holmes; A Siderowf; V Wojna; R Bode; N McKinney; T Podrabsky; K Wortman; S Choi; R Gershon; N Rothrock; C Moy Journal: Neurology Date: 2012-05-09 Impact factor: 9.910
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