Development of the Blood Pressure Symptom Subdomain for the SCI-QOL

SCI-QOL 的血压症状子域的开发

• 批准号: 8257861
• 负责人: Jill M. Wecht
• 金额: --
• 依托单位: JAMES J PETERS VA MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-04-01 至 2014-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8257861
• 关键词: Accounting; Address; Area; Autonomic Dysreflexia; Blood Pressure; Calibration; Caring; Chronic; Clinical; Clinical Medicine; Clinical Research; Clinical Trials; Clinical Trials Design; Cognitive; Community Participation; Data; Development; Discipline; Emotional; Ensure; Evaluation; Fatigue; Focus Groups; Foundations; Funding; Future; General Population; Generic Drugs; Glare; Goals; Health; Healthcare; Hospitals; Hypertension; Hypotension; Impairment; Individual; Information Systems; Institutes; Interview; Investigation; Life; Literature; Location; Long-Term Care; Measurement; Measures; Medical; Medical center; Mental Depression; Methodology; Methods; Michigan; Motivation; Oranges; Orthostatic Hypotension; Outcome; Outcome Measure; Pathology; Patient Outcomes Assessments; Patients; Persons; Population; Probability; Process; Property; Psychometrics; Quality of life; Quality-of-Life Assessment; Rehabilitation Research; Rehabilitation therapy; Relative Risks; Research; Research Personnel; Research Proposals; Research Support; Risk; Role; Sampling; Science; Social Functioning; Social isolation; Social support; Spinal cord injury; Symptoms; Techniques; Technology; Testing; Translating; Translations; United States; United States National Institutes of Health; Universities; Validation; Veterans; Well in self; Writing; base; clinical practice; clinically relevant; cost; disability; economic impact; functional restoration; health related quality of life; improved; medical complication; model development; nervous system disorder; physical conditioning; prevent; psychologic; response; satisfaction; social; sound; stem; theories; tool; trait

DESCRIPTION (provided by applicant): Investigators at the National Institute of Health (NIH) recognize that health related quality of life (HRQOL) outcomes measures, including physical health, psychological and emotional well being, level of social support, community participation, and level of everyday functioning, predict overall long term satisfaction of an individual. As such, the NIH has funded and continues to support research initiatives aimed at the development of validated clinical tools to assess HRQOL for use in the general population (e.g. Patient-Reported Outcomes Measurement Information System [PROMIS]), as well as in persons with neurological disorders (Neuro-QOL) and individuals with spinal cord injury (SCI-QOL). Due to the unique constellation of physical limitations and secondary medical complications, individuals with SCI represent a challenging model for the development of HRQOL tools. That said, because of multiple co-morbid medical conditions, small changes in physical, psychological or social function may be magnified and translate into significant improvement in HRQOL in persons with SCI. An area of clinical medicine that has been overlooked in the SCI population is blood pressure dysregulation (BPD), which frequently manifests in persistent hypotension, orthostatic hypotension and/or sustained hypertension, as well as episodic uncontrolled hypotension and/or severe hypertension. The impact of BPD on HRQOL in the SCI population is presently unknown, however there is substantial evidence that conditions of blood pressure pathology, specifically chronic hypotension and hypertension, contribute to poor quality of life, low motivation, fatigue, social isolation and depression in the general population. It is likely that the same risk is present in the SCI population although clinical medicine lacks a sensitive and specific measurement tool for the accurate assessment of the impact of BPD on HRQOL in these individuals. Improving our understanding of the impact of BPD on HRQOL in persons with SCI will help target patients at greater relative risk for diminished QOL stemming from these multifaceted conditions. The goal of this project is to develop a unique, clinically relevant and powerful tool to determine the impact of BPD on HRQOL in individuals with SCI. We anticipate that this HRQOL tool will be an integral part of all future SCI clinical trials and clinical practice; a glaring omission to our current evaluation processes. The proposal will utilize contemporary, state of the art techniques which combine technology with the science of measurement to collect reliable, valid and useful data from a large sample of individuals with SCI in a manner which will minimize the burden, yet will maximize the yield. Furthermore the investigative team is unique in their individual expertise and is well poised and exceedingly competent at each of the individual areas of investigation; the union of scientific intellect on the project is unparalleled.

描述（由申请人提供）： 美国国立卫生研究院 (NIH) 的研究人员认识到，与健康相关的生活质量 (HRQOL) 结果指标，包括身体健康、心理和情绪健康、社会支持水平、社区参与和日常功能水平，可以预测整体长期健康状况。个人的术语满意度。因此，NIH 资助并继续支持旨在开发经过验证的临床工具来评估 HRQOL 的研究计划，以供一般人群使用（例如患者报告结果测量信息系统 [PROMIS]）以及患有以下疾病的人神经系统疾病 (Neuro-QOL) 和脊髓损伤个体 (SCI-QOL)。由于身体限制和继发性医疗并发症的独特组合，SCI 个体对于 HRQOL 工具的开发来说是一个具有挑战性的模型。也就是说，由于多种共存疾病，身体、心理或社会功能的微小变化可能会被放大，并转化为 SCI 患者 HRQOL 的显着改善。 SCI 人群中被忽视的临床医学领域是血压失调 (BPD)，其经常表现为持续性低血压、直立性低血压和/或持续性高血压，以及阵发性不受控制的低血压和/或严重高血压。 BPD 对 SCI 人群 HRQOL 的影响目前尚不清楚，但有大量证据表明，血压病理状况，特别是慢性低血压和高血压，会导致 SCI 人群的生活质量差、动力不足、疲劳、社会孤立和抑郁。一般人群。尽管临床医学缺乏敏感且特异的测量工具来准确评估 BPD 对这些个体 HRQOL 的影响，但 SCI 人群中可能存在同样的风险。提高我们对 BPD 对 SCI 患者 HRQOL 影响的理解，将有助于针对因这些多方面病症而面临 QOL 下降相对风险较大的患者。该项目的目标是开发一种独特的、临床相关的、强大的工具来确定 BPD 对 SCI 个体 HRQOL 的影响。我们预计该 HRQOL 工具将成为未来所有 SCI 临床试验和临床实践中不可或缺的一部分；这是我们当前评估流程的明显遗漏。该提案将利用当代最先进的技术，将技术与测量科学相结合，从大量 SCI 个体样本中收集可靠、有效和有用的数据，从而最大限度地减少负担，同时最大限度地提高产量。此外，调查团队在各自的专业知识上是独一无二的，在每个调查领域都表现得很好并且非常有能力；该项目的科学智慧的结合是无与伦比的。