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首页> 外文期刊>Archives of Physical Medicine and Rehabilitation >Traumatic brain injury patient-reported outcome measure: identification of health-related quality-of-life issues relevant to individuals with traumatic brain injury.
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Traumatic brain injury patient-reported outcome measure: identification of health-related quality-of-life issues relevant to individuals with traumatic brain injury.

机译：创伤性脑损伤患者报告的结局指标：确定与脑外伤相关的健康相关生活质量问题。

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This 2-part qualitative study explored health-related quality of life (HRQOL) in individuals with traumatic brain injury (TBI). A community-based participatory action research design was used, which emphasizes collaboration between researchers and individuals with disabilities to ensure that results are relevant for individuals with TBI. In study 1, community members (N=20) with TBI served as experts and identifying HRQOL issues commonly experienced by individuals with TBI. Each participant identified at least 31 issues, with most generating more than 90 responses, highlighting the multifaceted nature of HRQOL in TBI. Study 2 consisted of 7 patient/consumer groups (33 individuals with TBI), 4 caregiver groups (17 caregivers), and 2 provider groups (15 providers). Qualitative analysis of patient focus groups indicated that 48% of focus group comments were related to emotional issues; 23%, to social functioning; 14%, to physical functioning; 11%, to cognition; and 7%, to personality changes (caregiver and provider focus group analysis indicated identical patterns of findings). In addition, both studies evaluated the applicability in TBI of generic items developed by the Patient-Reported Outcomes Measurement Information System and the Neurology Quality of Life Measurement initiative. Findings suggest that although there is some overlap between current generic measures of HRQOL and concepts reported by individuals with TBI, these generic measures do not capture the full complexity of HRQOL in TBI. TBI-targeted item banks are needed to ensure sensitive assessment of HRQOL in TBI.
机译：这项分为两部分的定性研究探讨了颅脑外伤（TBI）患者的健康相关生活质量（HRQOL）。使用了基于社区的参与式行动研究设计，该设计强调研究人员和残障人士之间的合作，以确保结果与TBI人士相关。在研究1中，具有TBI的社区成员（N = 20）充当专家，并确定TBI个人通常遇到的HRQOL问题。每个参与者至少确定了31个问题，其中大多数产生了90多个回应，突出了TBI中HRQOL的多面性。研究2包括7个患者/消费者组（33个患有TBI的患者），4个护理组（17个护理人员）和2个提供者组（15个提供者）。对患者焦点小组的定性分析表明，焦点小组的评论中有48％与情绪问题有关。 23％的人从事社会工作; 14％用于身体机能; 11％，为认知;以及7％的人格变化（照顾者和提供者焦点小组分析表明发现的模式相同）。此外，两项研究均评估了由患者报告的结果测量信息系统和神经学生活质量测量计划开发的通用项目在TBI中的适用性。研究结果表明，尽管当前的HRQOL通用指标与TBI个人报告的概念之间存在一些重叠，但这些通用指标并未涵盖HRQOL在TBI中的全部复杂性。需要以TBI为目标的项目库，以确保对TBI中的HRQOL进行敏感的评估。

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