Accessibility solutions for PRO management

PRO 管理的辅助功能解决方案

• 批准号: 7909050
• 负责人: DerShung Yang
• 金额: $ 31.19万
• 依托单位: BRIGHTOUTCOME INC.
• 依托单位国家: 美国
• 财政年份: 2010
• 资助国家: 美国
• 起止时间: 2010-06-01 至 2011-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7909050
• 关键词: Address; Adherence; Brain Diseases; Budgets; Caring; Chronic; Clinical; Clinical Research; Cognitive; Complex; Counseling; Development; Disease; Drug Monitoring; Economics; Engineering; Ensure; Epilepsy; Evaluation; Fatigue; Foundations; Goals; Health Status; Impaired cognition; Impairment; Individual; Internet; Intervention; Interview; Lesion; Measurement; Measures; Mental Depression; Monitor; Motor; Multiple Sclerosis; Neurocognitive; Neuropsychology; Occupational Therapy; Outcome; Outcome Assessment; Outcome Measure; Pain; Parkinson Disease; Patient Education; Patient Outcomes Assessments; Patient Self-Report; Patients; Phase; Physical therapy; Population; Process; Rehabilitation therapy; Research; Research Design; Self-Help Devices; Sleep disturbances; Solid; Solutions; Speech; Symptoms; System; Technology; Telephone; Therapeutic; Time; Visual; Voice; base; burden of illness; clinical care; design; disability; experience; functional disability; improved; multidisciplinary; oncology; public health relevance; socioeconomics; tool; touchscreen; usability

DESCRIPTION (provided by applicant): Our ultimate project goal is to develop a patient-reported outcomes (PRO) management system specifically designed to address the functional limitations experienced by people with physical and neurocognitive disabilities. We recognize that there are many clinical conditions that could cause these functional impairments, but intend to demonstrate the technical feasibility of our solution in Phase I by focusing on a single disease, multiple sclerosis (MS), for a more practical and manageable Phase I scope considering the Phase I budget and timeframe constraints. MS is ideal to begin the study of disability-related PRO solutions in a well circumscribed population since people with MS experience most of the functional limitations associated with other disabilities. In Phase II we will seek to expand our project scope to validate our solutions with other disability and rehabilitation populations. This new product will be developed based on our existing PRO management solution called BrightOutcome", that already supports such advanced features as the administration of "adaptive" PRO measures (including PROMIS item banks), the support of multiple delivery platforms, the rules-based delivery of tailored patient education contents, and the coordination of care via reminder/alert messages. Although the BrightOutcome System was initially designed for oncology practices, it provided a solid technical foundation to expand to other disease domains. For the disability and rehabilitation populations, however, the current BrightOutcome System does not yet offer a comprehensive accessibility solution, which is the focus of this Phase I project. To address the accessibility issues, our Phase I specific aims include: 1) the design and development of a PRO assessment interface specifically for MS patients with various functional impairments using different technology platforms (e.g., Web, touch-screen, speech/voice, and phone) via personal interviews and an iterative user-centric design process; and 2) the evaluation of system usability and user acceptance in both monitored (with usability engineers present) and realistic, un-monitored conditions. To ensure that our solution will be adequate not just for MS patients but for other disability and rehabilitation patients as well, we will assemble a multidisciplinary Expert Panel (physical therapy, occupational therapy, rehabilitation counseling, neuropsychology, assistive technologies, and PRO) to advise on our study design and analysis. PUBLIC HEALTH RELEVANCE: Whereas for a long time, MS was primarily considered a disease of ambulation or motor function, it is now recognized that visual symptoms, fatigue, cognitive impairment, depression, pain and sleep disturbances significantly contribute to the burden of disease and the overall functioning of MS patients. The effects of the "hidden disabilities" on the level of disability are significant. However, these MS symptoms and even more their complex relationship to each other are poorly understood. Patient reported outcomes are more predictive of patient health status and disability than objective measures, such as lesion load assessed by MRIs and other biophysical measures. Brief, yet reliable measurement tools of self-reported outcomes are essential in order to evaluate an individual's disease course, or to assess therapeutic benefits of specific interventions, pharmacological or otherwise. The proposed research will generate and validate tools to perform such measurements with direct clinical and research applications for the MS population. Barriers of PRO accessibility, though, are not limited to the MS population. People with other common disabilities, such as epilepsy, Parkinson's disease and other chronic impairments of bodily function endorse limitations of accessibility as well. As an example, patients with epilepsy commonly display a wide range of brain disease with associated physical, cognitive, educational and economic disease burden. Epilepsy is of great socioeconomic importance and PRO is expected to have the potential to improve clinical monitoring, drug adherence, overall clinical care and facilitate research of related topics.

描述（由申请人提供）：我们的最终项目目标是开发一种专门设计的患者报告的结果（PRO）管理系统，以解决身体和神经认知障碍患者所经历的功能限制。我们认识到，有许多临床疾病可能会导致这些功能障碍，但打算通过专注于单个疾病，多发性硬化症（MS）来证明我们解决方案的技术可行性，以考虑I期预算和时间表约束的更实际且易于管理的I阶段I范围。 MS是开始研究与残疾相关的Pro解决方案的理想选择，因为MS的人经历了与其他残疾相关的大多数功能限制。在第二阶段，我们将寻求扩大项目范围，以通过其他残疾和康复人群来验证我们的解决方案。该新产品将基于我们现有的专业管理解决方案（BrightOutcome）开发。 rehabilitation populations, however, the current BrightOutcome System does not yet offer a comprehensive accessibility solution, which is the focus of this Phase I project. To address the accessibility issues, our Phase I specific aims include: 1) the design and development of a PRO assessment interface specifically for MS patients with various functional impairments using different technology platforms (e.g., Web, touch-screen, speech/voice, and phone) via personal interviews and an iterative user-centric design process; 2）评估系统可用性和用户接受度（目前有可用性工程师）和现实，未监控的条件。为了确保我们的解决方案不仅适合MS患者，还适合其他残疾和康复患者，我们将组装一个多学科专家小组（物理疗法，职业治疗，康复咨询，神经心理学，辅助技术和Pro），以便在我们的研究设计和分析方面提供建议。 公共卫生相关性：虽然很长一段时间以来，MS主要被认为是一种行动或运动功能疾病，但现在已经认识到，视觉症状，疲劳，认知障碍，抑郁症，疼痛和睡眠障碍显着导致疾病负担和MS患者的整体功能。 “隐藏残疾”对残疾水平的影响很重要。但是，这些MS症状及其彼此之间的复杂关系更加了解。与客观措施相比，患者报告的结果更可预测患者的健康状况和残疾，例如通过MRI和其他生物物理措施评估的病变负荷。为了评估个人疾病病程或评估特定干预措施（药理或其他方式）的治疗益处，自我报告结果的简短测量工具至关重要。拟议的研究将生成和验证工具，以直接为MS人群进行直接临床和研究应用进行此类测量。但是，Pro可及性的障碍不仅限于MS人口。患有其他常见残疾的人，例如癫痫，帕金森氏病和其他慢性障碍，也支持身体功能的可及性限制。例如，癫痫患者通常表现出广泛的脑部疾病，并带有相关的身体，认知，教育和经济疾病负担。癫痫病具有极大的社会经济重要性，预计Pro有可能改善临床监测，药物依从性，整体临床护理并促进相关主题的研究。