Internet CareLink for Pediatric Home Chemotherapy

描述（由申请人提供）：我们建议评估儿科癌症护理链接，一个基于互联网的系统，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化疗周期，这些化疗可以在家中进行。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。儿童癌症护理链接将通过帮助他们的父母管理药物、治疗的副作用和潜在的并发症来支持这些儿童的护理。儿童癌症护理链接将为家庭提供与负责其孩子护理的肿瘤团队的直接联系。在我们的I期研究中，我们确定了儿科癌症护理链接的临床医生和患者需求。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，并且他们认为与没有系统相比，该系统将提供好处和优势。在第二阶段，我们的主要目标是评估使用儿童癌症护理链接的父母是否更愿意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没有使用护理链接的父母。我们还将评估使用癌症护理链接的患者是否比没有使用护理链接的患者报告更少的家庭用药错误或遗漏的药物剂量。20名无法访问儿科癌症护理链接的家长志愿者将被要求在孩子接受治疗2个月和6个月时完成两份问卷。这些问卷的结果将与20名家长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，他们确实可以访问儿科癌症护理链接。儿童癌症护理链接将为家庭提供一个直接、安全的互联网护理支持渠道，以帮助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对ALL患儿的护理过程和结果。儿科癌症护理链接将作为一个模式，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.