Improving Care for Children with Advanced Cancer

改善晚期癌症儿童的护理

• 批准号: 7075403
• 负责人: Joanne Wolfe
• 金额: $ 13.58万
• 依托单位: DANA-FARBER CANCER INST
• 依托单位国家: 美国
• 财政年份: 2002
• 资助国家: 美国
• 起止时间: 2002-08-01 至 2008-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7075403
• 关键词: adolescence (12-20); behavioral /social science research tag; cancer pain; clinical research; communication; data collection methodology /evaluation; decision making; human subject; longitudinal human study; middle childhood (6-11); neoplasm /cancer palliative treatment; online computer; parent offspring interaction; patient care management; patient oriented research; pediatric neoplasm /cancer; perception; personal computers; physicians; preschool child (1-5); prognosis; psychological aspect of cancer; quality of life; questionnaires; sign /symptom; terminal patient care

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.

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，已知这些症状可以有效缓解。 回顾性研究表明，在此期间，父母和医生的沟通很差，父母在理解孩子没有治愈的现实机会方面落后于医生三个月以上。 然而，医生和父母对儿童晚期预后的早期认识与姑息治疗的更好整合有关。 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，我们还将使用儿科症状生活质量评估技术（PediQUEST），这是一种基于计算机的手持式系统，用于定期评估晚期癌症儿童的生活质量和症状。 在本项目的干预阶段，我们将向供应商介绍PediQUEST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生成数据。 在获奖期间指导的研究活动将由职业发展计划，包括课程，研讨会，教学，委员会工作和临床责任，这将确保候选人成功过渡到一个独立的研究者，并成为儿科肿瘤学和姑息治疗的领导者。

项目成果

Considerations about hastening death among parents of children who die of cancer.

• DOI: 10.1001/archpediatrics.2009.295
• 发表时间: 2010-03
• 期刊: Archives of pediatrics & adolescent medicine
• 作者: Dussel V;Joffe S;Hilden JM;Watterson-Schaeffer J;Weeks JC;Wolfe J
• 通讯作者: Wolfe J

Experience of parents receiving results from a quality-of-life study in pediatric advanced cancer: A report from the PediQUEST study.

父母接受儿科晚期癌症生活质量研究结果的经历：PediQUEST 研究报告。

• DOI: 10.1002/pbc.27880
• 发表时间: 2019
• 期刊: Pediatric blood & cancer
• 影响因子: 3.2
• 作者: Bilodeau,Madeline;Dussel,Veronica;Wolfe,Joanne
• 通讯作者: Wolfe,Joanne

Tumor Talk and Child Well-Being: Perceptions of "Good" and "Bad" News Among Parents of Children With Advanced Cancer.

• DOI: 10.1016/j.jpainsymman.2016.11.013
• 发表时间: 2017-05
• 期刊: Journal of pain and symptom management
• 影响因子: 4.7
• 作者: Feraco AM;Dussel V;Orellana L;Kang TI;Geyer JR;Rosenberg AR;Feudtner C;Wolfe J
• 通讯作者: Wolfe J

Easing of suffering in children with cancer at the end of life: Is care changing?

• DOI: 10.1200/jco.2007.14.0277
• 发表时间: 2008-04-01
• 期刊: JOURNAL OF CLINICAL ONCOLOGY
• 影响因子: 45.3
• 作者: Wolfe, Joanne;Hammel, Jim F.;Weeks, Jane C.
• 通讯作者: Weeks, Jane C.

Parent Perceptions of Team-Delivered Care for Children With Advanced Cancer: A Report From the PediQUEST Study.

• DOI: 10.1016/j.jpainsymman.2020.05.019
• 发表时间: 2020-10
• 期刊: Journal of pain and symptom management
• 影响因子: 4.7
• 作者: Feraco AM;Ananth P;Dussel V;Al-Sayegh H;Ma C;Rosenberg AR;Feudtner C;Wolfe J
• 通讯作者: Wolfe J