Difference in reported pre-morbid health-related quality of life between ARDS survivors and their substitute decision makers

Abstract

Agreement between estimates of pre-morbid HRQOL provided by ARDS survivors and their substitute decision makers was poor. Compared with survivors, proxies tended to provide lower estimates of pre-morbid HRQOL. Substitute decision making for incapacitated patients is an imperfect process during which family members may underestimate their loved ones' own perception of pre-morbid health status. Alternatively, survivors of critical illness may overestimate pre-morbid HRQOL.

Combining nutrition and exercise to optimize survival and recovery from critical illness: Conceptual and methodological issues

“…While there are challenges to obtaining valid and reliable baseline measures of quality of life (e.g. balancing bias from patient retrospective recall with disagreement between proxy versus patient-based assessment) [92,93], more objective measures, such as those captured in frailty [94] and functional assessment [95] (including the physical function domain of SF-36 [96]), are reliable in some studies.…”

Spurious Inferences about Long-Term Outcomes

“…Respondents with severe sepsis were compared with their own pre-sepsis measurement of the outcome variables. These pre-sepsis assessments were collected prospectively, thus limiting the potential bias of retrospective assessment of the geriatric conditions before the sepsis episode (26,27). We present both unadjusted and adjusted models.…”

“…Such information would need to be reliable despite the challenges of retrospective collection. In practice it has proven challenging to obtain sufficiently reliable measurements of immediate prehospitalization function for critically ill patients (26,27). Advances in survey techniques, including facilitated recall prompted by medical record review, may mitigate this potential source of bias in cohort studies unable to prospectively collect prehospitalization data.…”

“…Cohort empanelment at diagnosis precludes prospective collection of prediagnosis information. Retrospective collection of prediagnosis data can be difficult (26,27). If outcomes are worse than "expected," it is sometime concluded that the condition caused the poor outcomes, although those arguments may only be implied.…”

Investigating Critically Ill Patients' and Families' Perceptions of Likelihood of Survival

“…40 Others have shown poor correlation between patients' and surrogates' assessments of health status with surrogates generally underestimating patients' health status which is acknowledged as a limitation in this study. 41,42 Investigation of communication and patient-centered models of decision making in the ICU is particularly challenging because of the role of surrogates [43][44][45] and in this study 77% of the respondents were surrogates reporting their perception of the patient's chance for survival. Surrogates routinely become a patient's decision maker in the ICU and this is particularly true for the most severely ill patients who generally lack decision making capacity.…”