Health Outcomes for Hodgkin Disease Survivors

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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.