Managing Uncertainty in Childhood Cancer Survivorship

管理儿童癌症生存的不确定性

• 批准号: 6763566
• 负责人: SHEILA JUDGE SANTACROCE
• 金额: $ 14.72万
• 依托单位: YALE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2004
• 资助国家: 美国
• 起止时间: 2004-09-01 至 2006-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6763566
• 关键词: adolescence (12-20); anxiety; behavior therapy; behavioral /social science research tag; clinical research; coping; data collection; health behavior; health care service utilization; human subject; interview; long term survivor; medical records; parents; pediatric neoplasm /cancer; posttraumatic stress disorder; questionnaires; stress management; therapy design /development; young adult human (21-34)

DESCRIPTION (provided by applicant): Long-term survivors of childhood cancer face physical late effects years after treatment ends. Survivors and their parents also experience psychosocial late effects such as posttraumatic stress symptoms (PTSS) and anxiety that are heightened by triggers of uncertainty, including follow-up health care visits. Uncertainty and psychosocial late effects can interfere with health care utilization and awareness of information about how to minimize physical late effects. The purpose of this pilot/feasibility study is to evaluate the feasibility of an integrated intervention for childhood cancer survivors and their parents and of using the "technology model" (Carroll et al., 2000) to control unsystematic variance in intervention delivery. Approximately 52 long-term childhood cancer survivors' ages 15 to 24 years, and their parents will be randomly assigned to the experimental or control group. Youth in the experimental group will receive comprehensive survivorship care, followed by 8 weekly telephone Coping Skills Training (CST) sessions that provide them with information about ways to cope with uncertainty and psychosocial late effects in survivorship. Parents of youth in the experimental group will also receive 8 weekly telephone CST sessions. Youth in the control group will receive comprehensive survivorship care. Youth in both groups and their parents will complete study questionnaires in the clinical setting at 4 points in time over 12 months. When youth in the control group and their parents have completed the questionnaires at the 3rd time point, they will receive 8 telephone CST sessions. 25 percent of youth in each treatment group, selected on the basis of the youth's level of PTSS at study entry, and their parents will be interviewed about their experience with comprehensive survivorship care and, as applicable, telephone CST. Data will be analyzed for differences over time between the groups on outcomes that include uncertainty management (knowledge, PTSS, health behavior), anxiety, quality of life, and posttraumatic growth. Interview data will be analyzed for risks and benefits of the integrated intervention, and to refine the intervention for future studies. Feasibility of using the technology model will be determined based on analysis of the effect of the measure of intervention fidelity on study outcomes for individual participants. This study is an important step in identifying models of care that promote functional uncertainty management, quality of life and posttraumatic growth, and limit adverse late effects and disability for long-term cancer survivors.

描述（由申请人提供）： 儿童癌症的长期幸存者在治疗结束后数年面临身体晚期效应。幸存者及其父母也会经历心理社会的后期影响，如创伤后应激症状（PTSS）和焦虑，这些症状会因不确定性的触发而加剧，包括后续的医疗保健访问。不确定性和心理社会的迟发效应可能会干扰医疗保健的利用和如何最大限度地减少身体迟发效应的信息的意识。该试点/可行性研究的目的是评估针对儿童癌症幸存者及其父母的综合干预以及使用“技术模型”的可行性（卡罗尔等人，2000年），以控制干预交付的非系统性差异。大约52名15至24岁的长期儿童癌症幸存者及其父母将被随机分配到实验组或对照组。实验组的青少年将接受全面的生存护理，然后每周进行8次电话应对技能培训（CST），为他们提供有关如何科普生存中的不确定性和社会心理后期影响的信息。实验组青少年的父母也将每周接受8次电话CST会议。对照组的青年将接受全面的生存护理。两组青少年及其父母将在12个月内的4个时间点在临床环境中完成研究问卷。当控制组的青少年及其父母在第三时间点完成问卷后，他们将接受8次电话CST会议。每个治疗组中25%的青年，根据研究开始时青年的PTSS水平进行选择，他们的父母将接受采访，了解他们对综合生存护理的经验，并在适用时致电CST。将分析各组之间随时间推移的结果差异，包括不确定性管理（知识，PTSS，健康行为），焦虑，生活质量和创伤后成长。访谈数据将分析综合干预的风险和益处，并为未来的研究改进干预措施。将根据干预保真度测量对个体受试者研究结局的影响分析，确定使用技术模型的可行性。这项研究是确定护理模式的重要一步，这些模式促进功能不确定性管理，生活质量和创伤后成长，并限制长期癌症幸存者的不良晚期影响和残疾。