Purpose: This study reports how QOL (quality of life) assessments differ between patients on prolonged mechanical ventilation (PMV) and their proxies (family caregivers and nurses).
Methods: We enrolled consecutive subjects on PMV for more than 21 days from five institutions. We conducted QOL assessments using the Taiwanese version of the EQ-5D in face-to-face interviews. Direct caregivers (family members and nurses) also completed the EQ-5D from the patient's point of view.
Results: For 55 of the 142 enrolled patients who were able to assess their QOL, we recruited 44 patient-family caregiver pairs, 53 patient-nurse pairs, and 42 family caregiver-nurse pairs. There were 81 family caregiver-nurse pairs out of 87 patients with poor cognition. The agreement between patient-family caregiver pairs was generally higher than that of patient-nurse pairs. As the proportions of exact agreement between family caregivers and nurses for patients with poor cognition were 98-99% for observable dimensions of mobility, self-care, and usual activities, they lead to a minimal difference in the final values.
Conclusions: QOL assessments from family caregivers agreed more closely with patients than did those from nurses using EQ-5D evaluations for patients with clear cognition, but either proxy was acceptable for rating PMV patients with poor cognition.
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