Improving Care for Children with Advanced Cancer

描述(申请人提供)：四分之一的癌症儿童无法存活，他们在生命的最后一个月经历了巨大的痛苦。例如，超过50%的儿童患有疼痛和呼吸困难，众所周知，这些症状可以得到有效的缓解。回顾研究表明，在这段时间里，父母和医生的沟通很差，父母比医生晚了三个月以上，因为他们知道孩子没有实际的治愈机会。然而，医生和父母及早认识到孩子的晚期预后与更好地整合姑息治疗有关。使用前瞻性队列设计，我们将在117名晚期癌症儿童中进行一项试点项目，以确定父母和医生对儿童随着时间的推移对预后和治疗目标的看法(使用纸和铅笔调查工具)。此外，我们将使用儿科生活质量症状评估技术(PediQUEST)，这是一个手持、基于计算机的系统，用于常规评估晚期癌症儿童的生活质量和症状。在该项目的干预阶段，我们将向供应商介绍儿科QUEST结果的即时反馈。此外，如果患者的症状超过预定阈值，将自动生成电子邮件消息。我们将初步评估该系统对症状和痛苦的自然病史、满意度以及临终讨论的时间和质量的影响，以便为未来的随机对照临床试验生成样本量计算数据。 在获奖期间指导的研究活动将得到包括课程作业、研讨会、教学、委员会工作和临床责任在内的职业发展计划的赞扬，这将确保候选人成功过渡到独立研究人员，并成为儿科肿瘤学和姑息治疗领域的领导者。

DESCRIPTION (provided by applicant): One quarter of children with cancer do not survive and they experience substantial suffering in the last month of life. For example, over fifty percent of children suffer from pain and dyspnea, symptoms known to be amenable to effective palliation. Retrospective studies have suggested that parent and physician communication during this period is poor, with parents lagging behind physicians by over three months in their understanding that the child has no realistic chance of being cured. Yet, earlier recognition of a child's terminal prognosis by both the physician and parents is associated with better integration of palliative care. Using a prospective cohort design we will perform a pilot project in 117 children with advanced cancer to ascertain parent and physician perceptions about the child's prognosis and treatment goals over time (using a paper and pencil survey instrument). In addition, we will use Pediatric Quality of Life Evaluation of Symptoms Technology (PediQUEST), a hand-held, computer-based system to routinely evaluate quality of life and symptoms experienced by children with advanced cancer. In the intervention phase of this project we will introduce immediate feedback of PediQUEST results to providers. In addition, electronic mail messages will be automatically generated if a patient's symptoms surpass a predetermined threshold. We will preliminarily assess the impact of this system on the natural history of symptoms and suffering, satisfaction, and the timing and quality of end-of-life discussions in order to generate data for sample size calculations for a future randomized controlled clinical trial. Mentored research activities during the award period will be complimented by a career development plan including coursework, seminars, teaching, committee work and clinical responsibilities which will ensure that the candidate makes a successful transition into an independent investigator and becomes a leader in pediatric oncology and palliative care.