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本文引用的文献

1
The TBI-CareQOL Measurement System: Development and Preliminary Validation of Health-Related Quality of Life Measures for Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury.TBI-CareQOL 测量系统:平民和军/退伍人员创伤性脑损伤护理人员健康相关生活质量测量的开发和初步验证。
Arch Phys Med Rehabil. 2019 Apr;100(4S):S1-S12. doi: 10.1016/j.apmr.2018.08.175. Epub 2018 Sep 7.
2
Understanding Health-Related Quality of Life of Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Social Health Measures.理解外伤性脑损伤平民和军人/退伍军人照顾者的健康相关生活质量:建立 PROMIS 社会健康测量的可靠性和有效性。
Arch Phys Med Rehabil. 2019 Apr;100(4S):S110-S118. doi: 10.1016/j.apmr.2018.06.026. Epub 2018 Jul 31.
3
The Development of a New Computer Adaptive Test to Evaluate Feelings of Being Trapped in Caregivers of Individuals With Traumatic Brain Injury: TBI-CareQOL Feeling Trapped Item Bank.一种新的计算机自适应测试的开发,用于评估创伤性脑损伤患者的照顾者的被困感:TBI-CareQOL 感觉被困项目库。
Arch Phys Med Rehabil. 2019 Apr;100(4S):S43-S51. doi: 10.1016/j.apmr.2018.06.025. Epub 2018 Jul 31.
4
The Development of a New Computer-Adaptive Test to Evaluate Strain in Caregivers of Individuals With TBI: TBI-CareQOL Caregiver Strain.用于评估脑损伤患者照顾者压力的新型计算机自适应测验的开发:TBI-CareQOL 照顾者压力。
Arch Phys Med Rehabil. 2019 Apr;100(4S):S13-S21. doi: 10.1016/j.apmr.2018.05.033. Epub 2018 Aug 25.
5
The Development of Two New Computer Adaptive Tests To Evaluate Feelings of Loss in Caregivers of Individuals With Traumatic Brain Injury: TBI-CareQOL Feelings of Loss-Self and Feelings of Loss-Person With Traumatic Brain Injury.开发两个新的计算机自适应测试来评估创伤性脑损伤患者照顾者的失落感:TBI-CareQOL 失落感-自我和创伤性脑损伤患者的失落感-人。
Arch Phys Med Rehabil. 2019 Apr;100(4S):S31-S42. doi: 10.1016/j.apmr.2018.05.026. Epub 2018 Jun 26.
6
The Development of a New Computer Adaptive Test to Evaluate Anxiety in Caregivers of Individuals With Traumatic Brain Injury: TBI-CareQOL Caregiver-Specific Anxiety.一种新的计算机自适应测试评估创伤性脑损伤患者照顾者焦虑的开发:TBI-CareQOL 照顾者特定焦虑。
Arch Phys Med Rehabil. 2019 Apr;100(4S):S22-S30. doi: 10.1016/j.apmr.2018.05.027. Epub 2018 Jun 26.
7
Understanding Health-related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Mental Health Measures.理解平民和军/退伍人员创伤性脑损伤照顾者的健康相关生活质量:建立 PROMIS 心理健康测量的可靠性和有效性。
Arch Phys Med Rehabil. 2019 Apr;100(4S):S94-S101. doi: 10.1016/j.apmr.2018.05.021. Epub 2018 Jun 19.
8
Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Fatigue and Sleep Disturbance Item Banks.理解平民和军人群体/退役军人创伤性脑损伤照顾者的健康相关生活质量:建立 PROMIS 疲劳和睡眠障碍项目库的可靠性和有效性。
Arch Phys Med Rehabil. 2019 Apr;100(4S):S102-S109. doi: 10.1016/j.apmr.2018.05.020. Epub 2018 Jun 20.
9
Caring for our wounded warriors: A qualitative examination of health-related quality of life in caregivers of individuals with military-related traumatic brain injury.关爱我们受伤的战士:对军事相关创伤性脑损伤患者照料者健康相关生活质量的质性研究
J Rehabil Res Dev. 2016;53(6):669-680. doi: 10.1682/JRRD.2015.07.0136.
10
A comprehensive picture of 4-year outcome of severe brain injuries. Results from the PariS-TBI study.严重脑损伤 4 年预后的全面描述。PariS-TBI 研究结果。
Ann Phys Rehabil Med. 2016 Apr;59(2):100-6. doi: 10.1016/j.rehab.2015.10.009. Epub 2015 Dec 17.

理解平民和军人群体/退役军人创伤性脑损伤护理者的健康相关生活质量:TBI-CareQOL 测量系统的可靠性和有效性数据。

Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Reliability and Validity Data for the TBI-CareQOL Measurement System.

机构信息

Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI.

Defense and Veterans Brain Injury Center, Walter Reed National Military Medical Center, Bethesda, MD; National Intrepid Center of Excellence, Walter Reed National Military Medical Center, Bethesda, MD; University of British Columbia, Vancouver, British Columbia, Canada.

出版信息

Arch Phys Med Rehabil. 2019 Apr;100(4S):S85-S93. doi: 10.1016/j.apmr.2018.05.034. Epub 2018 Jun 30.

DOI:10.1016/j.apmr.2018.05.034
PMID:29966648
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6311445/
Abstract

OBJECTIVES

To establish the reliability and validity of the newly developed TBI-CareQOL patient-reported outcome (PRO) measures in caregivers of civilians and service members/veterans (SMVs) with traumatic brain injury (TBI) so that they can be used with confidence in clinical research and practice.

DESIGN

Computer-based surveys delivered through an on-line data capture platform.

SETTING

Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility.

PARTICIPANTS

Caregivers (N=560) of individuals with TBI; this included 2 different study samples: 344 caregivers of civilians with TBI and 216 caregivers of SMVs with TBI.

INTERVENTION

Not Applicable.

MAIN OUTCOME MEASURES

Five Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) item banks.

RESULTS

Reliabilities for the TBI-CareQOL measures were excellent (all Cronbach's α >.88); 3-week test-retest reliability ranged from .75 to .90 across the 2 samples. Convergent validity was supported by moderate to high associations among the TBI-CareQOL measures and moderate correlations between the TBI-CareQOL measures and other measures of health-related quality of life (HRQOL) and caregiver burden. Discriminant validity was supported by low correlations between the TBI-CareQOL measures and less-related constructs (eg, caregiver satisfaction). Known-groups validity was supported: caregivers of individuals that were low functioning had worse HRQOL than caregivers of high-functioning individuals.

CONCLUSIONS

Results provide psychometric support for the new TBI-CareQOL item banks. As such, these measures fill a significant gap in the caregiver literature where sensitive PRO measures that capture changes in HRQOL are needed to detect improvements for interventions designed to assist family caregivers.

摘要

目的

确定新开发的创伤性脑损伤(TBI)患者报告结局(PRO)测量工具 TBI-CareQOL 在民用和军人/退伍军人(SMV)TBI 照顾者中的可靠性和有效性,以便在临床研究和实践中自信地使用。

设计

通过在线数据采集平台提供基于计算机的调查。

地点

三个 TBI 模型系统康复医院、一个学术医疗中心和一个军事医疗设施。

参与者

TBI 患者的照顾者(N=560);这包括 2 个不同的研究样本:344 名民用 TBI 照顾者和 216 名 SMV TBI 照顾者。

干预措施

不适用。

主要测量指标

5 个创伤性脑损伤照顾者生活质量(TBI-CareQOL)项目库。

结果

TBI-CareQOL 测量的可靠性非常好(所有 Cronbach's α>0.88);在这 2 个样本中,3 周的重测信度范围为 0.75 至 0.90。TBI-CareQOL 测量与 TBI-CareQOL 测量与其他健康相关生活质量(HRQOL)和照顾者负担测量之间的中度至高度相关性支持了收敛效度。区分效度得到了 TBI-CareQOL 测量与相关性较低的结构(例如,照顾者满意度)之间的低相关性的支持。已知组有效性得到支持:功能较低的个体的照顾者的 HRQOL 比功能较高的个体的照顾者差。

结论

结果为新的 TBI-CareQOL 项目库提供了心理测量学支持。因此,这些措施填补了照顾者文献中的一个重要空白,需要敏感的 PRO 措施来捕捉 HRQOL 的变化,以检测旨在帮助家庭照顾者的干预措施的改善。