PSYCHOLOGICAL OUTCOME IN CHILDHOOD CANCER SURVIVORS

描述（由申请人提供）：儿童癌症长期幸存者的适当护理取决于了解作为年轻成年长期幸存者的心理，包括心理社会晚期效应，对后续护理的反应，以及痛苦和参与医疗保健的预测因素。虽然年轻的成年癌症幸存者的痛苦率相对于正常人有所升高，但尚不清楚他们的痛苦与从未患病的同龄人的痛苦相比如何，或者与医疗保健相关的其他变量如何与痛苦相关。关于一个人的医疗脆弱性和医疗能力（健康能力信念; HCB）的信念理论上与痛苦和参与医疗保健，虽然这些关系还没有经验与儿童癌症的长期幸存者检查。本研究旨在探讨这些联系。目标1通过比较儿童期癌症的长期幸存者和一组健康个体在医疗访问时和两个月后的情况，确定了癌症特异性的痛苦。目的2提出发展一个可靠和有效的健康能力信念（HCB）与痛苦的简短筛选工具。目的三：探讨HCB幸存者健康风险认知、心理困扰与后续照护的相关性。将利用对现有数据的分析和8-12名长期幸存者的重点小组来制定六氯代苯措施。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例行随访/健康维护医疗访视时完成评估信念和痛苦的问卷调查，两个月后（通过邮件或互联网）。幸存者还将在12个月后完成问卷调查;将对医学晚期效应和治疗强度进行评级，并在12个月内跟踪与肿瘤医学团队的联系。这项研究的结果，预计将告知后续访问的结构，提供一个工具，以确定痛苦的幸存者，以及指导方针，以优化患者的适应性信念，他们的健康能力，从而最大限度地提高长期幸存者的使用保健和提高他们的身心健康。

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.