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Background: Caregivers, or proxies, often complete patient-reported outcomes (PROs) on behalf of patients; yet, research has demonstrated proxies rate patient outcomes worse than patients rate their own outcomes. To improve interpretability of PROs in group-level analyses, our study aimed to identify optimal approaches for reducing proxy-introduced bias in the analysis of PROs., Methods: Data were simulated based on 200 patients with stroke and their proxies who both completed 9 PROMIS domains as part of a cross-sectional study. The sample size was varied as 50, 100, 200, and 500, and the proportion of patients with proxy-respondents was varied as 10%, 20%, and 50%. Six methods for handling proxy-completions were investigated: (1) complete case analysis; (2) proxy substitution; (3) Method 2 plus proxy adjustment; (4) Method 3 including inverse-probability of treatment weighting; (5) multiple imputation; (6) linear equating. These methods were evaluated by comparing average bias in PROMIS T -scores (estimated versus observed patient-only responses), as well as by comparing estimated regression coefficients to models using patient-only responses., Results: Overall mean T -score differences ranged from 0 to 1.75. The range of mean differences varied by the 6 methods with methods 1 and 5 providing estimates closest to the observed mean. In regression models, all but inverse-probability of treatment weighting resulted in low bias when proxy-completions were 10% to 20%. With 50% proxy-completions, method 5 resulted in less accurate estimations while methods 1 to 3 provided less proxy-introduced bias. Bias remained low across domain and varying sample sizes but increased with larger percentages of proxy-respondents., Conclusions: Our study found modest proxy-introduced bias when estimating PRO scores or regression estimates across multiple domains of health. This bias remained low, even when sample size was 50 and there were large proportions of proxy-completions. While many of these methods can be chosen for including proxies in stroke PRO research with <20% proxy-respondents, proxy substitution with adjustment resulted in low bias with 50% proxy-respondents.

Objectives: (1) Examine 8 patient-reported domains of health across levels of disability compared to the US general population; and (2) identify factors associated with domain scores in patients with ischemic stroke., Methods: Observational cohort study of 1,195 patients in a cerebrovascular clinic from February 17, 2015, to January 27, 2017, who completed Neuro-QoL (Quality of Life in Neurological Disorders) executive function or the following PROMIS (Patient-Reported Outcomes Measurement Information System) scales as part of routine care: physical function, satisfaction with social roles, fatigue, anxiety, depression, pain interference, and sleep disturbance., Results: Mean age was 62 (±15) years, and 81% were white. Median modified Rankin Scale (mRS) score at the clinic visit was 1 (interquartile range 0-2). Percentage of patients with scores meaningfully worse than the general population ranged from 28% (sleep disturbance) to 63% (physical function). Scores were worse in patients with higher mRS levels, although correlation between scores and mRS level varied (sleep disturbance r = 0.16 to physical function r = 0.52). Most affected domains were physical function (T score = 58.8), satisfaction with social roles (T score = 55.4), and executive function (T score = 53.4). Disability, lower income, and female sex were associated with worse scores in multiple domains. Age was associated with worse physical function but lower anxiety, depression, and sleep disturbance., Conclusions: Patients with ischemic stroke reported symptoms in multiple domains that increase to variable degrees at higher levels of disability. Physical function, satisfaction with social roles, and executive function were most affected. This information improves our understanding of the well-being of patients with ischemic stroke and brings attention to the importance of social roles and executive function for stroke survivors., (© 2018 American Academy of Neurology.)

Study Design: Retrospective cohort study.Objective: To (1) confirm validity of Patient-Reported Outcomes Measurement Information System (PROMIS) physical function and pain interference computer-adaptive tests (CATs) and (2) assess the validity of PROMIS Global Health (GH) and five additional PROMIS CATs: social role satisfaction, fatigue, anxiety, depression, and sleep disturbance in a population of patients with chronic low back pain (cLBP) who completed a 3-month Interdisciplinary Pain Program (IPP).Summary Of Background Data: Recent recommendations for assessing outcomes in patients with cLBP have included PROMIS scales; however, there is a need for further evaluation, and PROMIS GH has not been studied in this population.Methods: The study cohort included patients with cLBP who completed the entirety of a 3-month IPP between August 2016 and December 2018. Patient-reported outcome measures (PROMs) were analyzed before the start of the IPP and at graduation. Convergent and discriminant validity were evaluated using Pearson correlation coefficients. Known groups' validity assessed the change in PROMIS scores stratified by improvement on the Modified LBP Disability Questionnaire. Responsiveness was evaluated with standardized response means based on global impression of change.Results: IPP was completed by 217 patients (67.7% women, age 53.8 ± 12.8). Convergent validity was supported (P < 0.01 for all pairwise PROMs comparisons). All PROMs improved significantly by graduation, with the largest improvement for PROMIS pain interference, physical function, social role satisfaction, and Modified LBP Disability Questionnaire. Known groups' validity demonstrated the greatest change on PROMIS physical function, social role satisfaction, pain interference, and depression. Responsiveness was supported for all PROMs in 170 (78.3%) patients who indicated at least minimal improvement (standardized response means 0.43-1.06).Conclusion: Our study provides support of PROMIS CATs, highlights the importance of including other meaningful outcome measures, such as social role satisfaction, and provides the first validation of PROMIS GH, in patients with cLBP. PROMs collection can be streamlined through the use of PROMIS CATs which offer advantages over legacy measures.Level Of Evidence: 3. [ABSTRACT FROM AUTHOR]