ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2021
The validity of proxy responses on patient-reported outcome measures: Are proxies a reliable alternative to stroke patients' self-report?
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
12 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- The psychometric properties of the Quality of Life in Neurological Disorders (Neuro-QoL) measurement system in neurorehabilitation populations: a systematic review.Journal of patient-reported outcomes · 2024Pooled it
- Assessment by proxy of the SF-36 and WHO-DAS 2.0. A systematic review.Journal of rehabilitation medicine · 2023Pooled it
- Development of an easy-read version of the Brain Injury associated Visual Impairment - Impact Questionnaire (BIVI-IQ).Clinical rehabilitation · 2026Article
- Vision screening in older adults who attend hospital following a fall: a scoping review.BMC geriatrics · 2025Article
- A Systematic Scoping Review of Measures Used to Evaluate Treatment-Induced Changes in Depression, Anxiety, and Chronic Stress in People with Post-Stroke Aphasia.Aphasiology · 2025Article
- Agreement between patient- and proxy-reported outcome measures in adult musculoskeletal trauma and injury: a scoping review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Professional reintegration of stroke survivors and their mental health, quality of life and community integration.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- Association between institutionalization by 4 months post-discharge walking capacity and lean body mass in elderly hip fracture patients: Evidence from a Swedish Registry Based Study.SAGE open medicine · 2024Article
- Use of Patient-Reported Outcomes Measurement Information System Measures in Clinical Research in Patients With Stroke: A Systematic Literature Review.Archives of rehabilitation research and clinical translation · 2022Review
- Agreement between older adult patient and caregiver proxy symptom reports.Journal of patient-reported outcomes · 2022Article
- Patient-proxy agreement on change in acute stroke patient-reported outcome measures: a prospective study.Journal of patient-reported outcomes · 2021Article
- Symptom Management Among Multiple Sclerosis Care Partners in Canada.International journal of MS careArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
purposeCaregivers, 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.
methodsStroke 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.
resultsThis 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.
conclusionsBoth 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.
Indexed as
Identifiers
33511498What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.