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.
