Managing Uncertainty in Childhood Cancer Survivorship

描述(由申请人提供)： 儿童癌症的长期幸存者在治疗结束数年后面临身体迟发效应。幸存者及其父母还会经历创伤后应激症状(PTSS)和焦虑等心理社会后遗症，而不确定性的触发因素，包括后续的医疗保健访问，会加剧这些后遗症。不确定性和心理社会后遗症可能会干扰卫生保健的利用和对如何将身体后遗症降至最低的信息的认识。这项试点/可行性研究的目的是评估对儿童癌症幸存者及其父母进行综合干预的可行性，以及使用“技术模式”(Carroll等人，2000年)控制干预提供的非系统差异的可行性。大约52名年龄在15岁到24岁之间的长期儿童癌症幸存者及其父母将被随机分配到试验组或对照组。试验组的年轻人将接受全面的生存护理，然后每周接受8次电话应对技能培训(CST)，为他们提供有关如何应对不确定性和生存中的心理社会后遗症的信息。试验组的青少年家长还将每周收到8次CST电话会议。对照组青少年将接受全面的生存护理。两组的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。当对照组的青少年和他们的父母在第3个时间点完成问卷调查后，他们将接受8次电话CST会议。根据青年入学时的PTSS水平选择的每个治疗组中25%的青年及其父母将接受访谈，了解他们在综合生存护理方面的经验，并酌情通过电话CST。数据将分析两组之间随着时间的推移在结果方面的差异，这些结果包括不确定性管理(知识、PTSS、健康行为)、焦虑、生活质量和创伤后增长。访谈数据将分析综合干预的风险和好处，并为未来的研究完善干预措施。使用技术模型的可行性将基于对干预保真度测量对单个参与者的研究结果的影响的分析来确定。这项研究是确定护理模式的重要一步，这些模式可以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后遗症和残疾。

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.