Reliability of proxy reports on patient reported outcomes measures in stroke: An updated systematic review

Abstract

Objectives: With the rising global burden of stroke-related morbidity, and increased focus on patient-centered healthcare, patient reported outcome measures (PROMs) are increasingly used to inform healthcare decision-making. Some stroke patients with cognitive or motor impairments are unable to respond to PROMs, so proxies may respond on their behalf; the reliability of which remains unclear. The aim of the study is to update a 2010 systematic review to investigate the inter-rater reliability of proxy respondents answering PROMs for stroke patients.

Materials and methods: Studies on the reliability of proxy respondents in stroke were searched within CINAHL, Embase, PsycInfo, and WoS databases (01/07/22, 08/07/22). Fifteen studies were included for review. ICC and k-statistic were extracted for PROMs scales and categorized as poor (</=0.40), moderate (0.41-0.60), substantial (0.61-0.80), or excellent (>0.80). Bias was assessed using the CCAT.

Results: Five studies reported PROMs with inter-rater reliability scores ranging from </= 0.40 to >0.80. Two studies reported activities of daily living (ADLs) scores ranging from 0.41 to 0.80 and 8 studies reported quality of life (QoL) measures with scores ranging from </= 0.40 to >0.80. Subcategories of these scales included physical (ICC/k-statistic 0.41- >0.8), cognitive (ICC/k-statistic 0.40-0.80), communication (ICC/k-statistic <0.4-0.80,) and psychological (ICC/k-statistic <0.40-0.60) measures.

Conclusions: Proxy respondents are reliable sources for PROM reports on physical domains in ADLs, PROMs and QoL scales. Proxy reports for measures of communication and psychological domains had greater variability in reliability scores, ranging from poor to substantial; hence, caution should be applied when interpreting proxy reports for these domains.

Keywords: Agreement; PROMs; Patient reported outcome measures; Proxy respondents; Reliability; Stroke.