Health Outcomes for Hodgkin Disease Survivors

描述（由申请人提供）： 儿童霍奇金病的生存率现在超过85%，导致越来越多的幸存者面临长期不良健康相关结局的风险。随着时间的推移，随着多模态治疗的变化，这些结果的发生率和范围可能会发生变化。尽管有20世纪60年代至80年代早期接受治疗的患者的长期不良健康相关结局的数据，但从1987年至今，几乎没有系统收集到关于在更现代的时代接受治疗的患者的类似结局的信息。后一个时期值得注意的是治疗研究的设计，部分是为了减少长期发病率和死亡率。这些治疗变化包括减少使用烷化剂、奥拉西环素以及放射治疗剂量和照射野，特别是减少心肺、内分泌、生殖和心理健康领域的不良长期结果，并减少继发性恶性肿瘤的发生率。霍奇金病幸存者这些不良长期结局的累积发生率和谱尚不清楚。因此，幸存者和卫生保健提供者不清楚是否需要对晚期发病率进行长期监测，或应以何种方式进行监测。 拟议的研究将以合作方式利用两种独特的资源：儿童癌症幸存者研究（CCSS），一项由NCI支持的27个机构的队列研究，跟踪14000名儿童癌症患者的结局。（1905年霍奇金病）幸存者和儿童肿瘤学小组，国家癌症研究所支持的238个机构的儿科合作小组，该研究所负责为北美大多数儿科患者开展治疗和迟发效应研究。从这些独特的资源中，我们确定了13个机构，其临床和研究基础设施支持基于风险的结果研究。在这些机构中，我们确定了1051名霍奇金病幸存者，1986年后接受或平行于风险适应合作组协议治疗。在这组幸存者中，使用自我报告和临床评价的组合，我们将：1）确定累积发生率并描述所选不良生理和心理结局的谱; 2）将累积发生率和自我报告不良结局的谱与1975年至1986年接受治疗的患者队列进行比较，并在诊断后的可比时间段收集数据;以及3）将自我报告的健康相关结果与通过临床评估或医疗记录审查检测到的结果进行比较和验证。

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.