Symptom Monitoring and Reporting System for Pediatric Chronic Illness

描述(申请人提供)：治疗慢性病儿童症状的努力没有跟上治疗进展的步伐。在患者、医疗保健提供者和系统层面上，已经提出了对及时症状管理的各种障碍。因此，在包括长期随访在内的整个治疗过程中，一个有效且易于使用的症状监测和报告程序对于患有慢性病的儿童及其家人是必要的。我们相信，可以通过使用面向患者、基于技术的症状监测系统来满足这一需求，该系统将慢性病儿童经历的症状报告给他们的父母和医疗保健提供者，这将改善以患者为中心的护理。拟议工作的总体目标是以肿瘤学为起点，建立儿科人群症状监测和报告系统(Symon-PEDS)。我们相信，西蒙-PEDS可以促进患者、家庭和医疗保健提供者之间的有效互动，正如瓦格纳改善慢性病护理的模型中所描述的那样。鉴于这项拟议研究的探索性性质，我们将只关注单一症状--疲劳，因为它几乎是所有年龄的癌症患者在疾病和治疗过程中的普遍经历。研究还表明，疲劳被认为是最常见和最令人痛苦的癌症症状之一，但通常也是治疗效果最差的症状。我们计划通过招募100名7-17岁的癌症患者及其父母之一来完成为期8周的西蒙-儿科干预，以实现研究目标。儿科癌症患者和他们的父母每周都会通过电话或互联网登录到西蒙-儿科系统，报告孩子们的疲劳感受。疲劳评分以图形形式显示在报告中，供家长和肿瘤科临床医生在未来就诊时使用。此外，如果儿童的疲劳评分达到或超过预定义的阈值，研究护士将联系他们的父母和肿瘤学家，实时提供护理建议。这项研究的具体目标是：1)评估在儿科肿瘤诊所实施Symon-PEDS系统的可行性、其被癌症儿童家长和儿童临床医生接受的程度，以及家长对该系统的满意度；以及2)探讨Symon-PEDS在控制疲劳方面的效果。我们预计，西蒙-儿科将是可行的，可接受的，并受到家长和供应商的欢迎。在一项单臂研究中，我们预计患者报告的疲劳及其父母代理将比基线有所改善，为包括标准护理比较的最终随机试验奠定基础。我们还将测量疲劳相关的痛苦、疲劳管理的感知障碍和健康保护行为，以确定这种新型IT干预的有效性的可能中介因素。我们还将衡量与健康相关的总体生活质量，将其作为更广泛的次要终点。 公共卫生相关性：我们建议开发和评估在儿科肿瘤诊所实施儿童人群症状监测和报告系统(Symon-PEDS)的可行性、癌症儿童的父母和儿童肿瘤临床医生对该系统的接受度，以及家长对该系统的满意度。我们还建议探索西蒙-PEDS系统在管理疲劳方面的有效性。

DESCRIPTION (provided by applicant): Efforts to manage symptoms experienced by children with chronic illness have not kept pace with advances in their treatments. Various barriers to timely symptom management have been proposed, at the patient, healthcare provider and system levels. Thus, an effective and easy-to-use symptom monitoring and reporting program is warranted for children with chronic illness, and their families, throughout the treatment continuum including long-term follow-up. We believe this need can be addressed by using a patient-oriented, technology-based, symptom monitoring system, which reports symptoms experienced by children with chronic illness to their parents and healthcare providers, will improve patient-centered care. The overall objective of the proposed work is to build the Symptom Monitoring and Reporting System in Pediatric Populations (SyMon- Peds), using oncology as a starting point. We believe SyMon-Peds can facilitate productive interactions between patients, families and healthcare providers as described in Wagner's model for improvement of chronic illness care. Given the exploratory nature of the proposed study, we will focus only on a single symptom, fatigue, as it is a nearly universal experience for cancer patients of all ages across the disease and treatment continuums. Studies have also shown that fatigue is perceived as being among the most frequently experienced and distressing cancer symptoms, but often also the symptom that is least effectively treated. We plan to achieve the study aims by recruiting 100 cancer patients 7-17 years old and one of their parents to complete an 8-week SyMon-Peds intervention. Pediatric cancer patients and their parents will both log in to the SyMon-Peds system weekly, either by phone or via the internet, to report perceptions of the children's fatigue. Fatigue scores are graphically represented in reports available to parents and oncology clinicians at future medical visits. Further, if children's fatigue scores reach or surpass a predefined threshold, a research nurse will contact their parents and oncologists to provide care recommendations in real-time. Specific aims to be achieved via the completion of the study are: 1) evaluate the feasibility of implementing the SyMon-Peds system in pediatric oncology clinics, its acceptability by parents of children with cancer and the children's clinicians, and parents' satisfaction with it; and 2) explore the efficacy of the SyMon-Peds in managing fatigue. We anticipate that SyMon-Peds will be feasible, acceptable and well-received by parents and providers. In a single-arm study, we anticipate that patient-reported fatigue and its parent-proxy will show improvement from baseline, setting the stage for a definitive randomized trial that includes a standard care comparison. We will also measure fatigue-related distress, perceived barriers to fatigue management, and health protective behaviors, to identify possible mediators of the effectiveness of this novel IT intervention. We will also measure general health-related quality of life as a broader, secondary endpoint. PUBLIC HEALTH RELEVANCE: We propose to develop and evaluate the feasibility of implementing the Symptom Monitoring and Reporting System for Pediatric Populations (SyMon-Peds) in pediatric oncology clinics, its acceptability by parents of children with cancer and the children's oncology clinicians, and parents' satisfaction with it. We also propose to explore the efficacy of the SyMon-Peds system in managing fatigue.