Health Outcomes for Hodgkin Disease Survivors

霍奇金病幸存者的健康结果

• 批准号: 6763537
• 负责人: Debra L Friedman
• 金额: $ 45.58万
• 依托单位: SEATTLE CHILDREN'S HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2004
• 资助国家: 美国
• 起止时间: 2004-09-21 至 2008-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6763537
• 关键词: Hodgkin' s disease; clinical research; depression; human morbidity; human subject; long term survivor; longitudinal human study; myocardium disorder; neoplasm /cancer chemotherapy; neoplasm /cancer radiation therapy; outcomes research; patient oriented research; posttraumatic stress disorder; pulmonary fibrosis /granuloma; quality of life; questionnaires; sign /symptom; social psychology; therapy adverse effect; thyroid disorder

DESCRIPTION (provided by applicant): Survival from pediatric Hodgkin disease now exceeds 85%, resulting in a growing cohort of survivors who are at risk for adverse long-term health-related outcomes. With changes in multi-modality therapy over time, the incidence and spectrum of such outcomes is likely to change. Despite data on long-term adverse health-related outcomes for patients treated in the 1960's through the early 1980's, little information has been systematically collected regarding similar outcomes for patients treated in the more contemporary era from 1987 to the present. This latter period was notable for therapeutic studies designed, in part, to reduce long-term morbidity and mortality. Such therapeutic changes included a reduction the use of alkylating agents, authracyclines, and radiotherapy doses and fields, specifically to decrease adverse long-term outcomes in areas of cardiopulmonary, endocrine, reproductive and psychological health and to decrease the incidence of secondary malignant neoplasms. The cumulative incidence and spectrum of these adverse long-term outcomes for Hodgkin disease survivors is not known. As a result, survivors and health care providers are unclear about the need for long-term surveillance for late morbidity, or the manner in which it should be delivered. The proposed research will utilize two unique resources in a collaborative manner: the Childhood Cancer Survivor Study (CCSS), an NCI-supported 27-institution cohort study tracking the outcomes of 14.000 childhood cancer (1905 Hodgkin disease) survivors and the Children's Oncology Group, the NCI-supported 238-institution pediatric cooperative group, which is responsible for developing therapeutic and late effects studies for the majority of pediatric patients in North America. From these unique resources, we have identified 13 institutions, with clinical and research infrastructures to support risk-based outcomes studies. In these institutions we have identified 1051 Hodgkin disease survivors, treated after 1986 on or in parallel to risk-adapted cooperative group protocols. In this cohort of survivors, using a combination of self-report and clinical evaluation, we will: l) determine the cumulative incidence and characterize the spectrum of selected adverse physiologic and psychosocial outcomes; 2) compare the cumulative incidence and spectrum of self-reported adverse outcomes with a cohort of patients treated from 1975 to 1986, with data collected at a comparable time period since diagnosis; and 3) compare and validate self-reported health-related outcomes with those detected by clinical evaluations or medical record review.

描述（由申请人提供）： 儿科霍奇金病的存活率现已超过 85%，导致越来越多的幸存者面临长期健康相关不良后果的风险。随着时间的推移，多模式治疗发生变化，此类结果的发生率和范围可能会发生变化。尽管有 1960 年代至 1980 年代初接受治疗的患者的长期不良健康相关结果的数据，但关于 1987 年至今接受治疗的患者的类似结果，系统收集的信息却很少。后一个时期因旨在降低长期发病率和死亡率的治疗研究而引人注目。此类治疗变化包括减少烷化剂、甲环素以及放射治疗剂量和照射野的使用，特别是减少心肺、内分泌、生殖和心理健康领域的长期不良结果，并降低继发性恶性肿瘤的发病率。霍奇金病幸存者这些不良长期后果的累积发生率和范围尚不清楚。因此，幸存者和医疗保健提供者不清楚是否需要对晚期发病进行长期监测，也不清楚监测的方式。 拟议的研究将以合作的方式利用两个独特的资源：儿童癌症幸存者研究（CCSS），这是一项由 NCI 支持的 27 家机构的队列研究，追踪 14,000 名儿童癌症（1905 年霍奇金病）幸存者的结果；以及儿童肿瘤学小组，这是由 NCI 支持的 238 家机构的儿科合作小组，负责开发治疗和治疗方案。 针对北美大多数儿科患者的后期影响研究。从这些独特的资源中，我们确定了 13 家拥有临床和研究基础设施来支持基于风险的结果研究的机构。在这些机构中，我们已经确定了 1051 名霍奇金病幸存者，他们在 1986 年之后按照风险适应合作小组方案或同时接受治疗。在这组幸存者中，结合自我报告和临床评估，我们将： l) 确定累积发生率并描述选定的不良生理和社会心理结果的范围； 2) 将自述不良结果的累积发生率和范围与 1975 年至 1986 年接受治疗的一组患者进行比较，并在诊断后的可比较时间段收集数据； 3) 将自我报告的健康相关结果与临床评估或病历审查检测到的结果进行比较和验证。