Institute of Occupational Medicine and Industrial Hygiene, College of Public Health, National Taiwan University, and Department of Internal Medicine, National Taiwan University Hospital, Rm. 719, No 17, Xuzhou Rd, Taipei, Taiwan.
Qual Life Res. 2010 Jun;19(5):721-7. doi: 10.1007/s11136-010-9629-1. Epub 2010 Mar 12.
This study reports how QOL (quality of life) assessments differ between patients on prolonged mechanical ventilation (PMV) and their proxies (family caregivers and nurses).
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.
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.
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.
本研究报告了在接受长时间机械通气（PMV）的患者及其代理人（家庭护理人员和护士）之间，生活质量（QOL）评估的差异。
我们从五家机构连续招募了接受 PMV 治疗超过 21 天的患者。我们通过面对面访谈使用台湾版 EQ-5D 进行 QOL 评估。直接护理人员（家庭成员和护士）也从患者的角度完成了 EQ-5D。
在 142 名能够评估自身 QOL 的纳入患者中，我们招募了 44 对患者-家庭护理人员、53 对患者-护士和 42 对家庭护理人员-护士。在认知能力差的 87 名患者中，有 81 对家庭护理人员-护士。患者-家庭护理人员对之间的一致性通常高于患者-护士对之间的一致性。由于对于认知能力差的患者，家庭护理人员和护士对于可观察维度的移动、自我护理和日常活动的完全一致比例为 98-99%，因此最终值的差异很小。
使用 EQ-5D 评估时，对于认知能力清晰的患者，家庭护理人员的 QOL 评估与患者更为一致，但对于认知能力差的 PMV 患者，任何一种代理评估都是可以接受的。
