Integrated Brain Health Clinical and Research Program, Department of Psychiatry, Massachusetts General Hospital/Harvard Medical School, One Bowdoin Square, 1st Floor, Suite 100, Boston, MA, USA.
Harvard Medical School, Harvard University, Boston, MA, USA.
Neurocrit Care. 2021 Dec;35(3):756-766. doi: 10.1007/s12028-021-01222-3. Epub 2021 Apr 21.
Neuro-ICU hospitalization for an acute neurological illness is often traumatic and associated with heightened emotional distress and reduced quality of life (QoL) for both survivors and their informal caregivers (i.e., family and friends providing unpaid care). In a pilot study, we previously showed that a dyadic (survivor and caregiver together) resiliency intervention (Recovering Together [RT]) was feasible and associated with sustained improvement in emotional distress when compared with an attention placebo educational control. Here we report on changes in secondary outcomes assessing QoL.
Survivors (n = 58) and informal caregivers (n = 58) completed assessments at bedside and were randomly assigned to participate together as a dyad in the RT or control intervention (both 6 weeks, two in-person sessions at bedside and four sessions via live video post discharge). We measured QoL domain scores (physical health, psychological, social relations, and environmental), general QoL, and QoL satisfaction using the World Health Organization Quality of Life Abbreviated Instrument at baseline, post treatment, and 3 months' follow-up. We conducted mixed model analyses of variance with linear contrasts to estimate (1) within-group changes in QoL from baseline to post treatment and from post treatment to 3 months' follow-up and (2) between-group differences in changes in QoL from baseline to post treatment and from post treatment to 3 months' follow-up.
We found significant within-group improvements from baseline to post treatment among RT survivors for physical health QoL (mean difference 1.73; 95% confidence interval [CI] 0.39-3.06; p = 0.012), environmental QoL (mean difference 1.29; 95% CI 0.21-2.36; p = 0.020), general QoL (mean difference 0.55; 95% CI 0.13-0.973; p = 0.011), and QoL satisfaction (mean difference 0.87; 95% CI 0.36-1.37; p = 0.001), and those improvements sustained through the 3-month follow-up. We found no significant between-group improvements for survivors or caregivers from baseline to post treatment or from post treatment to 3 months' follow-up for any QoL variables (i.e., domains, general QoL, and QoL satisfaction together).
In this pilot study, we found improved QoL among survivors, but not in caregivers, who received RT and improvements sustained over time. These RT-related improvements were not significantly greater than those observed in the control. Results support a fully powered randomized controlled trial to allow for a definitive evaluation of RT-related effects among dyads of survivors of acute brain injury and their caregivers.
神经重症监护病房(Neuro-ICU)中急性神经疾病的住院治疗常常会给患者及其非正式照护者(即提供无偿照护的家属和朋友)带来创伤,并导致他们的情绪困扰加剧,生活质量(quality of life,QoL)下降。在一项试点研究中,我们发现,与关注安慰剂的教育对照相比,一种双人(患者和照护者一起)弹性干预(Recovering Together [RT])是可行的,并且与情绪困扰的持续改善相关。在此,我们报告了次要结局评估 QoL 的变化情况。
患者(n=58)和非正式照护者(n=58)在床边完成评估,并随机分配为双人组,分别接受 RT 或对照干预(均为 6 周,在床边进行 2 次面对面治疗,出院后通过实时视频进行 4 次治疗)。我们在基线、治疗后和 3 个月随访时使用世界卫生组织生活质量简表评估 QoL 领域评分(生理健康、心理、社会关系和环境)、总体 QoL 和 QoL 满意度。我们采用混合模型方差分析和线性对比来估计:(1)从基线到治疗后和从治疗后到 3 个月随访时,QoL 的组内变化;(2)从基线到治疗后和从治疗后到 3 个月随访时,QoL 的组间差异。
我们发现,在接受 RT 的患者中,从基线到治疗后,患者的生理健康 QoL(平均差异 1.73;95%置信区间 [CI] 0.39-3.06;p=0.012)、环境 QoL(平均差异 1.29;95% CI 0.21-2.36;p=0.020)、总体 QoL(平均差异 0.55;95% CI 0.13-0.973;p=0.011)和 QoL 满意度(平均差异 0.87;95% CI 0.36-1.37;p=0.001)均有显著的组内改善,这些改善在 3 个月的随访中仍持续存在。我们没有发现幸存者或照护者从基线到治疗后或从治疗后到 3 个月随访时,任何 QoL 变量(即领域、总体 QoL 和 QoL 满意度)的组间改善。
在这项试点研究中,我们发现接受 RT 的患者的 QoL 得到改善,但照护者的 QoL 没有改善,而且这种改善持续存在。这些与 RT 相关的改善并不显著大于对照组的改善。结果支持开展一项充分的随机对照试验,以对急性脑损伤患者及其照护者的双人组进行 RT 相关效果的确定性评估。