Family and professionals underestimate quality of life across diverse cultures and health conditions: systematic review

Abstract

Proxies tend to be imprecise, underestimating QoL, and should be aware of this tendency. Where health care is decided for others, family members' views about QoL should be prioritized.

The impact of a visual arts program on quality of life, communication, and well-being of people living with dementia: a mixed-methods longitudinal investigation

“…With our larger sample, we found a significant improvement for the DEMQOL-Proxy but no significant effects for the DEMQOL. This is in contrast to suggestions that proxy reports of QoL are often under-estimated compared to patient self-assessment (Crocker et al, 2015).…”

Psychometric validation of the Coronary Revascularisation Outcome Questionnaire (CROQv2) in the context of the NHS Coronary Revascularisation PROMs Pilot

“…The CROQ was developed as a selfadministered postal survey, but our subgroup analysis demonstrated that the psychometric properties were not compromised when patients received help in the clinical setting, despite the fact that research has shown that family and professionals tend to underestimate patients quality of life status across diverse cultured and health conditions. 24 Our analysis also confirmed that the psychometric properties are withheld when the postrevascularisation version is administered at 5-7 months (rather than 3 months) postrevascularisation by postal survey. As such it is appropriate to administer the CROQ at prerevascularisation (by survey or in the clinical setting) and at 3 or 6 months postrevascularisation by postal survey.…”

“…[18][19][20][21][22][23] Completion of PROMs by persons other than the patient can introduce bias; for example, family and professionals tend to underestimate patient's quality of life status across diverse cultures and health conditions. 24 All changes made to the original version of an instrument require revalidation of the instrument, when used in a new context. 18 For use in the NHS Coronary Revascularisation PROMs Pilot, changes were made to the original version of the CROQ (necessitating a new version, CROQv2), including some changes to the text, a change to the postrevascularisation assessment point (from 3 to 6 months postrevascularisation), method of administration, setting of administration and sampling frame (see table 1 and online supplementary appendices 1-4).…”

Toward mindfulness in quality-of-life research: perspectives on how to avoid rigor becoming rigidity

“…If a patient and a proxy diverge in assessing the patient’s QOL, it is almost a moral imperative that the patient is ‘right’. For example, discrepancies between patient-proxy ratings are interpreted, a priori, as evidence of the inaccuracy or biased nature of proxy-generated data, even if the patient is intellectually impaired [26]. However, the level of patient-proxy agreement is also influenced by methodological and psychometric factors.…”