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年轻成年长期幸存者的心理理解，包括心理社会后期影响、对后续护理的反应、痛苦的预测因素和对医疗保健的参与。尽管年轻成年癌症幸存者的痛苦率相对于正常水平有所上升，但尚不清楚他们的痛苦与从未患病的同龄人的报告相比如何，也不清楚与医疗保健相关的其他变量如何与痛苦相关。关于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，尽管这些关系尚未对儿童癌症的长期幸存者进行经验检验。本研究旨在检验这些联系。目的1通过比较儿童癌症的长期幸存者在就诊时和两个月后与一组匹配的健康个体进行比较，确定癌症特异性的痛苦。目标2建议开发一种可靠有效的健康能力信念（HCB）简短筛选工具，这些信念与痛苦有关。目的3旨在检验幸存者HCB、健康风险知识、心理困扰和随访护理之间的关系。对现有数据的分析和8-12名长期幸存者的焦点小组将用于制定HCB措施。在试点可行性测试后，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常规随访/健康维护医疗访问中完成问卷调查，评估信念和痛苦，并在两个月后（通过邮件或互联网）。幸存者还将在12个月后完成调查问卷；将评估医疗后期效果和治疗强度，并在12个月内跟踪与肿瘤医疗小组的联系。本研究的结果有望通过提供一种识别痛苦幸存者的工具，以及优化患者对其健康能力的适应性信念的指南，从而最大限度地提高长期幸存者对医疗保健的使用，增强他们的身心健康，从而为随访的结构提供信息。

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.