ArticleJournal of patient-reported outcomes2022
Agreement between older adult patient and caregiver proxy symptom reports.
Article in Journal of patient-reported outcomes, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 2 of them syntheses that pooled it.
What it found
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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
24 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- A systematic review of goal attainment scaling implementation practices by caregivers in randomized controlled trials.Journal of patient-reported outcomes · 2024Pooled it
- Needs-based triggers for timely referral to palliative care for older adults severely affected by noncancer conditions: a systematic review and narrative synthesis.BMC palliative care · 2023Pooled it
- A Hospice Intervention for Caregivers: Improving Home Hospice Management of End-Of-Life Symptoms (I-HoME) Pilot Study.Journal of the American Geriatrics Society · 2025Trial
- Variables associated with self- and proxy-perceived difficulties in independent living for patients with bipolar disorder and comorbid dementia.European archives of psychiatry and clinical neuroscience · 2026Article
- Agreement Between Self-Reported and Proxy-Reported Pain in Veterans With Advanced Heart Failure.The American journal of hospice & palliative care · 2026Article
- Frailty and the confidence to plan ahead: Decision-making self-efficacy and advance care planning among older adults receiving home healthcare.Palliative & supportive care · 2026Article
- Feasibility and Acceptability of a Patient- and Family-Oriented Approach to Pain Assessment in the Intensive Care Unit.Nursing in critical care · 2026Article
- Assisted living resident quality of life questionnaire: development and validation.Journal of patient-reported outcomes · 2026Article
- The Critical Care Pain Observation Tool for Families (CPOT-Fam).Canadian journal of pain = Revue canadienne de la douleur · 2026Article
- A brief checklist of modifiable dementia risk factors (RF12): associations with cognitive and affective measures in an Italian cohort.Frontiers in aging neuroscience · 2026Article
- Huntington's disease caregivers: A qualitative exploration of caregivers experience.Journal of health psychology · 2026Article
- The relative importance of key life domains for people with disability: findings from a cross-sectional survey of NDIS participants in Australia.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Two decades of end-of-life conditions of older adults: older and more protracted?SSM - population health · 2025Article
- End-of-Life Symptoms in Persons Dying With Advanced Dementia in the Community Setting: Findings From IN-PEACE.Journal of pain and symptom management · 2025Article
- Challenges and Recommendations for Proxy Reporting in Aging Research: A Brief Commentary.Cureus · 2024Review
- Article
- Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review.Journal of the American Geriatrics Society · 2023Article
- Does Differential Item Functioning Jeopardize the Comparability of Health-Related Quality of Life Assessment Between Patients and Proxies in Patients with Moderate-to-Severe Traumatic Brain Injury?Neurocritical care · 2023Article
- Fixing the Leaky Pipe: How to Improve the Uptake of Patient-Reported Outcomes-Based Prognostic and Predictive Models in Cancer Clinical Practice.JCO clinical cancer informatics · 2023Article
- Development of consensus-based considerations for use of adult proxy reporting: an ISOQOL task force initiative.Journal of patient-reported outcomes · 2023Review
Corrections and comments
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Authors and funding
3 authors.
Funding
Abstract
backgroundProxy report is essential for patients unable to complete patient-reported outcome (PRO) measures themselves and potentially beneficial when the caregiver perspective can complement patient report. In this study, we examine agreement between self-report by older adults and proxy report by their caregivers when completing PROs for pain, anxiety, depression, and other symptoms/impairments.
methodsFour PROs were administered by telephone to older adults and their caregivers followed by re-administration within 24 h in a random subgroup. The PROs included the PHQ-9 depression, GAD-7 anxiety, PEG pain, and SymTrak multi-dimensional symptom and functional status scales.
resultsThe sample consisted of 576 older adult and caregiver participants (188 patient-caregiver dyads, 200 patients without identified caregiver). The four measures had good internal (Cronbach's alpha, 0.76 to 0.92) and test-retest (ICC, 0.63 to 0.92) reliability whether completed by patients or caregivers. Total score and item-level means were relatively similar for both patient and caregiver reports. Agreement for total score as measured by intraclass correlation coefficient (ICC) was better for SymTrak-23 (0.48) and pain (0.58) than for anxiety (0.28) and depression (0.25). Multinomial modeling showed higher (worse) patient-reported scale scores were associated with caregiver underreporting, whereas higher caregiver task difficulty was associated with overreporting.
conclusionWhen averaged over individuals at the group level, proxy reports of PRO scores by caregivers tend to approximate patient reports. For individual patients, proxy report should be interpreted more cautiously for psychological symptoms as well as when patient-reported symptoms are more severe, or caregiver task difficulty is high.
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