Improving Care for Children with Advanced Cancer

描述（由申请人提供）：四分之一患有癌症的儿童无法生存，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，这些症状是可以有效缓解的。回顾性研究表明，在此期间，父母和医生的沟通很差，父母对孩子没有实际治愈机会的认识落后于医生三个多月。然而，医生和父母对儿童终末预后的早期认识与姑息治疗的更好整合有关。采用前瞻性队列设计，我们将在117名晚期癌症儿童中进行试点项目，以确定家长和医生对儿童预后和治疗目标的看法（使用纸笔调查工具）。此外，我们将使用儿童生活质量症状评估技术（PediQUEST），这是一种手持式计算机系统，用于常规评估晚期癌症儿童的生活质量和症状。在这个项目的干预阶段，我们将引入PediQUEST结果的即时反馈给供应商。此外，如果患者的症状超过预定的阈值，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史、满意度以及临终讨论的时间和质量的影响，以便为未来随机对照临床试验的样本量计算提供数据。

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.