Patient/Family Education in Pediatric Oncology: State of the Science Symposium

 描述(申请人提供)：美国每年超过15,000名被诊断患有癌症的儿童和青少年中的大多数都在220多所顶尖大学、癌症中心和儿童医院接受儿童肿瘤学小组(COG)的临床试验。COG护理学科由代表所有COG站点的2000多名注册护士组成。患者/家庭教育是儿科肿瘤学的核心责任 护士和COG护士在为参加COG临床试验的新诊断患者提供这种教育方面发挥了关键作用。这些新确诊患者的父母/照顾者需要专门的教育，以便在家中为这些儿童提供持续的护理。缺乏足够的患者/家庭教育有可能显著影响试验结果。然而，到目前为止，很少有研究旨在确定基本信息内容、内容的质量或用于向新诊断的儿科肿瘤患者的父母/照顾者提供基本信息内容的方法的有效性。认识到这一差距，COG护理学科提议召开一次为期一天的会议，名为“儿科肿瘤学中的患者/家庭教育：科学研讨会的现状”，以通过专家共识的建立，为患者/家庭教育中的最佳实践提出建议。拟议的会议将建立在COG护理学科内已经进行的工作的基础上，包括德尔福小组关于在孩子被诊断出癌症后为父母/照顾者的安全出院做好充分准备所必需的关键内容的结果报告、旨在确定支持有效提供患者/家庭教育的现有证据的系统文献审查、针对当前患者/家庭教育实践的COG机构调查，以及关于儿童癌症诊断后父母关于知识获取的研究。此外，大会还将汇聚成功执行过患者/家庭教育项目(即1型糖尿病、早产儿)的肿瘤学以外的儿科亚专科专家、儿科急性护理出院准备方面的专家以及儿科肿瘤学领域的主要利益相关者/多学科专家，以促进专家就患者/家庭教育的最佳实践达成共识。这次会议将提供一个独特的机会，促进对话、讨论和专家就儿科肿瘤学的患者/家庭教育达成共识。在这次会议上形成的专家共识将导致最佳实践建议的传播，这些建议将为以证据为基础的干预计划的发展奠定基础，该计划旨在标准化基本信息内容，并支持在&gt；220个COG机构中有效地向新诊断的家庭提供患者/家庭教育。这些干预计划有可能增加父母/照顾者对基本信息的接受，并促进接受COG临床试验护理的儿童安全和适当的家庭护理和遵守方案。

 DESCRIPTION (provided by applicant): The majority of the over 15,000 children and adolescents diagnosed with cancer in the United States each year are treated on Children's Oncology Group (COG) clinical trials at over 220 leading universities, cancer centers, and children's hospitals. The COG Nursing Discipline consists of over 2,000 registered nurses representing all COG sites. Patient/family education is a core responsibility of pediatric oncology nurses, and COG nurses assume a key role in the delivery of this education for newly diagnosed patients enrolled on COG clinical trials. Parents/caregivers of these newly diagnosed patients require specialized education in order to provide ongoing care for these children at home. Lack of adequate patient/family education has the potential to significantly influence trial outcomes. However, a paucity of research to date has aimed to determine the essential informational content, the quality of that content, or the efficacy of the methods utilized for delivery of essential informational content to parents/caregivers of newly diagnosed pediatric oncology patients. Recognizing this gap, the COG Nursing Discipline is proposing a one-day conference, "Patient/Family Education in Pediatric Oncology: State of the Science Symposium" to develop recommendations for best practices in patient/family education through expert consensus building. The proposed conference will build on work already in progress within the COG Nursing Discipline, including a report of results from a Delphi panel regarding the key content necessary to adequately prepare parents/caregivers for a safe discharge home following their child's cancer diagnosis, a systematic literature review aimed at identifying available evidence to support effective delivery of patient/family education, a survey across COG institutions addressing current patient/family education practices, and a study of parental perspectives regarding knowledge acquisition following the diagnosis of cancer in a child. Additionally, the conference will bring together experts from pediatric subspecialties beyond oncology who have successfully-executed patient/family education programs (i.e., type 1 diabetes, premature newborns), experts in discharge readiness from pediatric acute care, and key stakeholders/multidisciplinary experts from within pediatric oncology, to facilitate expert consensus-building regarding best practices in patient/family education. This conference will provide a unique opportunity for stimulating dialogue, discussion, and expert consensus-building regarding patient/family education in pediatric oncology. The expert consensus developed at this conference will result in dissemination of best practice recommendations that will lay the groundwork for the development of evidence-based intervention programs aimed at standardizing essential informational content and supporting the effective delivery of patient/family education for newly diagnosed families across the >220 COG institutions. These intervention programs have the potential to increase the uptake of essential information by parents/caregivers, and to facilitate safe and appropriate home care and protocol compliance for children receiving care on COG clinical trials.