Lucke Kathleen T, Coccia Holly, Goode Joseph S, Lucke Joseph F
University of Pittsburgh School of Nursing, USA.
Qual Life Res. 2004 Feb;13(1):97-110. doi: 10.1023/B:QURE.0000015284.95515.17.
Addressing quality of life (QOL) issues in the spinal cord injured (SCI) population is imperative as the majority survive their initial injury and longevity now approaches that of the general population. The purpose of this mixed method, descriptive, longitudinal feasibility study was to describe and compare QOL in 10 adult SCI individuals and their family caregivers (FCs) during the initial 6 months following rehabilitation. Instruments used were the SF-36 and two horizontal visual analog scales, one for pain and one for QOL. Participants completed the instruments and a face-to-face in-depth interview at 1-, 3-, and 6-months following inpatient rehabilitation. SCI individuals reported low physical function, role physical (RP), and role emotional (RE) scores on the SF-36, while reporting high general health (GH), mental health and social functioning on the SF-36. FCs reported lower RP, GH and vitality scores, while reporting higher physical functioning and RE scores. On the visual analog scales, persons with SCI reported lower QOL while FCs reported more pain at 3 and 6 months. This study suggests that more work is needed to identify interventions which could enhance QOL during the transition from rehabilitation to home for SCI individuals and their FCs.
由于大多数脊髓损伤(SCI)患者在初期损伤后存活下来,且现在其寿命已接近普通人群,因此解决脊髓损伤人群的生活质量(QOL)问题势在必行。这项混合方法的描述性纵向可行性研究的目的是描述和比较10名成年脊髓损伤患者及其家庭照顾者(FCs)在康复后的最初6个月内的生活质量。使用的工具是SF-36和两个水平视觉模拟量表,一个用于疼痛,一个用于生活质量。参与者在住院康复后的1个月、3个月和6个月完成这些工具以及一次面对面的深入访谈。脊髓损伤患者在SF-36上报告的身体功能、角色身体(RP)和角色情感(RE)得分较低,而在SF-36上报告的总体健康(GH)、心理健康和社会功能得分较高。家庭照顾者报告的RP、GH和活力得分较低,而报告的身体功能和RE得分较高。在视觉模拟量表上,脊髓损伤患者在3个月和6个月时报告的生活质量较低,而家庭照顾者报告的疼痛较多。这项研究表明,需要做更多工作来确定在脊髓损伤患者及其家庭照顾者从康复过渡到家庭期间可以提高生活质量的干预措施。