Quality of life in multiple sclerosis: should clinicians trust proxy ratings?

Abstract

The level of agreement found between client and proxy scores and the tendency for proxies to underestimate clients' scores are consistent with research with other client groups. The overestimation by proxies of clients who rate their QoL as poor needs further investigation. If confirmed it may complicate the estimation of client scores from those of proxies. We conclude that while proxy scores may be useful as a means of estimating the QoL of groups of clients in research studies they should be used cautiously in the prediction of the QoL of individual clients at the clinical level.

Proxy ratings from multiple sources: disagreement on the impact of multiple sclerosis on daily life

“…In this study, we found a lower agreement between patients and close relatives compared with our previous study [4]. Agreement was also lower in comparison with a study on proxy measurements on quality of life in MS [22] and patient-proxy studies in other diseases [14,23]. The characteristics of the patient sample may be a factor in this observation.…”

Responsiveness of patient-based and external rating scales in multiple sclerosis: Head-to-head comparison in three clinical settings

“…This is especially relevant for global QoL scores and affective-emotional dimensions. Proxy ratings might help to control this effect, although recent findings indicate that they may underestimate QoL in patients [27].…”

Reliability of health-related quality-of-life assessments made by older adults and significant others for health states of increasing cognitive impairment

“…Hence, it is important to know the extent to which significant others can accurately assess patients’ quality of life in health states that impair cognitive functioning. Paradoxically, the accuracy of substituted judgment cannot be examined for patients who most need family members’ involvement in decision making, i.e., those who are decisionally incapacitated [18, 19]. As an alternative, researchers have compared family assessments to those of persons with various degrees of cognitive impairment yet still capable of self-report or, in fewer instances, to those made by patients after they have regained capacity [16].…”