PSYCHOLOGICAL OUTCOME IN CHILDHOOD CANCER SURVIVORS

儿童癌症幸存者的心理结果

• 批准号: 6765045
• 负责人: ANNE E KAZAK
• 金额: $ 37.1万
• 依托单位: CHILDREN'S HOSP OF PHILADELPHIA
• 依托单位国家: 美国
• 财政年份: 2004
• 资助国家: 美国
• 起止时间: 2004-08-01 至 2009-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6765045
• 关键词: adolescence (12-20); attitude; behavioral /social science research tag; clinical research; coping; disease /disorder proneness /risk; health behavior; health care model; health care service evaluation; health care service utilization; health services research tag; human subject; interview; long term survivor; longitudinal human study; model design /development; neoplasm /cancer education; pediatric neoplasm /cancer; posttraumatic stress disorder; psychological aspect of cancer; psychological stressor; quality of life; questionnaires; relapse /recurrence; young adult human (21-34)

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.

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的了解，包括心理社会后期影响、对后续护理的反应以及痛苦和参与的预测因素。卫生保健。尽管年轻的成年癌症幸存者的痛苦率高于正常水平，但尚不清楚他们的痛苦与匹配的从未生病的同龄人报告的痛苦相比如何，也不知道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实证检验。本研究旨在检验这些联系。目标 1 通过将儿童癌症的长期幸存者与就诊时和两个月后的匹配的健康个体进行比较，识别癌症特异性的痛苦。目标 2 建议开发一种可靠且有效的简短筛查工具，用于检查与痛苦相关的健康能力信念 (HCB)。目标 3 提议测试幸存者 HCB、健康风险知识、心理困扰和后续护理之间的关联。对现有数据和 8-12 名长期幸存者的焦点小组的分析将用于制定 HCB 衡量标准。经过试点可行性测试后，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/健康维护医疗访问中填写问卷，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团队的联系。这项研究的结果预计将通过提供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，从而为随访结构提供信息，从而最大限度地提高长期幸存者对医疗保健的利用并增强他们的身心健康。