Use of HIT to Improve Symptom Mgt in Advanced Cancer

描述（由申请人提供）：重病和濒死患者往往患有可治疗的症状，包括身体和心理。在这种环境和人群中持续存在显著症状困扰有几种可能的解释：1)患者层面的药物或非药物干预可能在绝症人群中无效或研究不充分；2)护理提供者（无论是非正式的还是专业的）可能无法识别痛苦症状，导致痛苦症状治疗不足；3)那些正在经历痛苦症状的人（患者）和那些有能力解决痛苦的人（卫生保健提供者）可能没有有效的沟通手段。本计划的目的是研究在安宁疗护/缓和疗护环境中，实施以病人为中心的技术系统，以改善症状管理的可行性，并确定初步的效应量。该项目的具体目标是：1)开发、测试和完善以患者为中心的健康信息技术（HIT）干预措施的组成部分，该干预措施将具有实时反馈的顺序标准化症状和生活质量评估纳入常规护理；2)针对提供临终关怀/姑息治疗的不同机构以及接受这些机构治疗的不同晚期癌症患者，对以患者为中心的症状管理HIT干预的覆盖范围和有效性进行可行性研究。这项可行性研究将测试一个双向系统，在这个系统中，病人、非正式照护者和临终关怀/姑息治疗提供者可以输入数据并接收总结症状痛苦信息和及时护理干预的报告。这项研究将在社区安宁疗护/缓和疗护研究网络中进行。如果作为一种双向症状管理和预警系统是可行的，那么以患者为中心的系统可能适用于其他环境和其他癌症阶段的症状管理。该项目的研究结果将为一项更大规模随机临床试验的R01提案提供参考，以测试症状管理HIT干预对减轻晚期癌症患者症状困扰的有效性。

DESCRIPTION (provided by applicant): Seriously ill and dying patients often suffer from treatable symptoms, both physical and psychological. There are several possible explanations for the persistence of significant symptom distress in this setting and population: 1) Patient-level pharmacologic or non-pharmacologic interventions may ineffective or inadequately studied in the terminally ill population; 2) Care providers (either informal or professional) may not recognize symptom distress, leading to under treatment of distressing symptoms; 3) Those who are experiencing the symptom distress (patients) and those who have the ability to address the distress (health care providers) may not have effective means of communicating. The purpose of this proposed project is to study the feasibility and determine preliminary effect sizes of implementing a patient-centered technology-based system for improving symptom management in hospice/palliative care settings. The Specific Aims of the proposed project are to: 1) Develop, test and refine components of a patient-centered health information technology (HIT) intervention that incorporates sequential standardized symptom and quality of life assessments with real-time feedback into routine care; and 2) Conduct a feasibility study of the reach and effectiveness of the patient-centered symptom management HIT intervention with diverse organizations providing hospice/palliative care and diverse people with advanced cancer receiving care from these organizations. This feasibility study will test a bi-directional system where patients, informal caregivers and hospice/palliative care providers can enter data and receive reports that summarize symptom distress information and prompt care interventions. The study will be conducted in a community-based hospice/palliative care research network. If shown feasible as a two-way symptom management and alerting system, the patient-centered system may be adapted to assist with symptom management in other settings and other cancer stages. Findings from this project will inform preparation of an R01 proposal for a larger-scale randomized clinical trial to test the efficacy of the symptom management HIT intervention for decreasing symptom distress among persons with advanced cancer.