PSYCHOLOGICAL OUTCOME IN CHILDHOOD CANCER SURVIVORS

描述(由申请人提供)：对儿童癌症长期幸存者的适当护理取决于对青年长期幸存者的心理的理解，包括心理社会后遗症、对后续护理的反应以及痛苦和参与卫生保健的预测因素。尽管年轻的成年癌症幸存者的痛苦发生率高于正常水平，但目前尚不清楚他们的痛苦与从未患病的同龄人报告的痛苦相比如何，也不知道其他与医疗保健相关的变量可能与痛苦有何关联。关于一个人的医疗脆弱性和医疗能力的信念(健康能力信念；HCB)在理论上与痛苦和参与医疗保健有关，尽管这些关系尚未在儿童癌症长期幸存者中得到经验检验。这项研究旨在考察这些联系。目标1通过比较儿童癌症长期幸存者在就诊时和两个月后匹配的健康个体组来识别癌症特有的痛苦。目标2建议开发一种可靠和有效的健康能力信念(HCB)的简短筛选工具，这些信念与痛苦有关。目的3建议测试幸存者HCB、健康风险知识、心理困扰和后续护理之间的关系。将利用对现有数据的分析和对8-12名长期幸存者的重点群体的分析来制定HCB措施。在试点可行性测试之后，150名16-39岁的儿童癌症长期幸存者和300名从未患病的年轻人将在例行的后续/健康维护医疗访问中完成评估信念和痛苦的问卷，并在两个月后(通过邮件或互联网)完成。幸存者还将在12个月后完成问卷调查；将对医疗延迟效应和治疗强度进行评级，并将在12个月内跟踪与肿瘤医疗队的联系。这项研究的结果预计将通过提供一种工具来识别痛苦的幸存者，并提供指导方针来优化患者对其健康能力的适应性信念，从而为后续访问的结构提供信息，从而最大限度地利用长期幸存者的医疗保健，并增强他们的身心健康。

DESCRIPTION (provided by applicant): Appropriate care for long-term survivors of childhood cancer depends on understanding the psychology being a young adult long-term survivor, including psychosocial late effects, reactions to follow-up care, and predictors of distress and participation in health care. Although young adult cancer survivors have elevated rates of distress relative to norms, it is not known how their distress compares to that reported by a matched of never ill peers, or how other variables related to health care might be associated with distress. Beliefs about one's medical vulnerability and medical competence (health competence beliefs; HCB) are theoretically related to distress and to participation in health care, although these relationships have not been examined empirically with long-term survivors of childhood cancer. This study aims to examine these links. Aim 1 identifies distress that is cancer-specific by comparing long-term survivors of childhood cancer to a matched group of well individuals at the time of a medical visit and two months later. Aim 2 proposes to develop a reliable and valid brief screening tool of health competence beliefs (HCB) that are associated with distress. Aim 3 proposes to test the association among survivors HCB, health risk knowledge, psychological distress, and follow-up care. Analysis of existing data and focus groups of 8-12 long-term survivors will be used to develop the HCB measure. After pilot feasbility testing, 150 16-39 year old long-term survivors of childhood cancer and 300 never ill young adults will complete questionnaires assessing beliefs and distress at a routine follow-up/health maintenance medical visit, and two months later (by mail or Internet). Survivors will also complete the questionnaires 12 months later; medical late effect and treatment intensity will be rated and contact with the oncology medical team will be tracked over 12 months. The findings of this study are expected to inform the structure of follow-up visits by providing a tool to identify distressed survivors, as well as guidelines to optimize patients adaptive beliefs about their health competence, thereby maximizing long-term survivors' use of health care and enhancing their physical and psychological well-being.