Symptom Monitoring and Reporting System for Pediatric Chronic Illness

描述（由申请人提供）：对患有慢性疾病的儿童所经历的症状进行管理的努力没有跟上治疗的进步。在患者、医疗保健提供者和系统层面，提出了各种及时症状管理的障碍。因此，在整个治疗过程中，包括长期随访，一个有效且易于使用的症状监测和报告程序对患有慢性疾病的儿童及其家庭是必要的。我们相信这一需求可以通过使用以患者为导向、以技术为基础的症状监测系统来解决，该系统将慢性病儿童的症状报告给他们的父母和医疗保健提供者，将改善以患者为中心的护理。本研究的总体目标是以肿瘤学为起点，建立儿童症状监测和报告系统（SyMon- Peds）。我们相信simon - peds可以促进患者、家庭和医疗保健提供者之间富有成效的互动，正如瓦格纳改善慢性病护理的模型所描述的那样。考虑到拟议研究的探索性，我们将只关注疲劳这一单一症状，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体验。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，但往往也是治疗效果最差的症状。我们计划通过招募100名7-17岁的癌症患者和他们的一位父母来完成为期8周的simon - peds干预来实现研究目标。儿童癌症患者和他们的父母每周都会通过电话或互联网登录西蒙-儿科系统，报告孩子们的疲劳感受。疲劳评分以图形形式呈现在报告中，供家长和肿瘤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。完成本研究的具体目的是：1)评估在儿科肿瘤诊所实施simon - peds系统的可行性、癌症患儿家长和儿童临床医生对该系统的接受程度以及家长对该系统的满意度；2)探讨simon - peds治疗疲劳的疗效。我们预计，西蒙-儿科将是可行的，可接受的，并受到家长和提供者的欢迎。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从基线显示改善，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干预措施有效性的可能中介。我们还将测量一般健康相关的生活质量作为一个更广泛的次要终点。

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.