Internet CareLink for Pediatric Home Chemotherapy

描述（由申请人提供）：我们建议评估儿科癌症CareLink，这是一种基于互联网的系统，旨在支持儿童白血病的家庭管理。儿童白血病的治疗方案包括多个周期的化疗，可以在家里进行。然而，在家中正确使用这些可能挽救生命的药物是一个安全问题。儿科癌症CareLink将通过帮助他们的父母管理药物、治疗副作用和潜在并发症来支持这些儿童的护理。儿科癌症CareLink将为家庭提供与负责儿童护理的肿瘤学团队的直接联系。在我们的I期研究中，我们确定了儿科癌症CareLink的临床医生和患者要求。我们确定，家庭和临床医生可能会使用基于互联网的支持系统，他们相信该系统将提供的好处和优势相比，没有系统可用。在II期研究中，我们的主要目标是评估能够访问Pediatric Cancer CareLink的父母是否能够更轻松地在家管理孩子的药物和药物副作用，以及他们对孩子接受的整体门诊护理的满意度是否高于无法访问CareLink的父母。我们还将评估可访问Cancer CareLink的患者报告的在家用药错误或漏服药物剂量是否少于无法访问CareLink的患者。将要求20名无法访问儿科癌症CareLink的家长志愿者在其孩子接受治疗后2个月和6个月时完成两份问卷。这些问卷的结果将与20名父母志愿者在孩子接受治疗2个月和6个月时的相同问卷进行比较，这些父母志愿者确实可以访问儿科癌症CareLink。儿科癌症CareLink将为家庭提供一个直接，安全的互联网护理支持渠道，他们的癌症护理团队。这一创新系统将使提供者和家庭能够改善ALL儿童的护理流程和结果。PediatricCancer CareLink将作为一个模式，为处理其他形式癌症和其他治疗方案的患者和家庭加强护理过程和结果。

DESCRIPTION (provided by applicant): We propose to evaluate Pediatric Cancer CareLink, an Internet-based system designed to support home management of childhood leukemia. Protocols for childhood leukemia involve multiple cycles of chemotherapy that can be administered at home. However, the proper administration of these potentially life-saving medications in the home is a safety issue. Pediatric Cancer CareLink will support the care of these children by helping their parents manage medications, side effects of treatment, and potential complications. Pediatric Cancer CareLink will provide families with a direct link to the oncology team responsible for their child's care. In our Phase I research we identifed clinician and patient requirements for Pediatric Cancer CareLink. We determined that families and clinicans would be likely to use the Internet-based support system and that they believed the system would provide benefits and advantages compared with not having the system available. In Phase II our primary objectives will be to evaluate whether parents with access to Pediatric Cancer CareLink are more comfortable with managing their child's medications and medication side effects at home, and whether they report a higher level of satisfaction with the overall outpatient care that their child receives, than are parents without access to CareLink. We will also evaluate whether patients with access to Cancer CareLink report less at home medication errors or missed medication doses, than do patients do not have access to CareLink. Twenty parent volunteers who do not have access to Pediatric Cancer CareLink will be asked to complete two questionnaires at 2 months and 6 months into their child's therapy. Results from these questionnaires will be compared with the same questionnaires from twenty parent volunteers at 2 months and 6 months into their child's therapy, who do have access to Pediatric Cancer CareLink. Pediatric Cancer CareLink will provide families a direct, secure Internet care support channel to their cancer care team. This innovative system will empower providers and families to improve care processes and outcomes for children with ALL. PediatricCancer CareLink will serve as a model for enhancing care processes and outcomes for patients and families dealing with other forms of cancer and with other treatment regimens.