What is the ECHOS-NHL study?

Non-Hodgkin's lymphoma (NHL) ranks amongst the top six cancer sites in terms of incidence for both men and women. Since the 1970s, incidence rates for NHL have increased dramatically, making it one of the fastest rising cancers in the U.S. It is also one of few cancers to have shown large absolute gains over time in 5-year survival rates.

Based on histology, adult NHLs are classified as either indolent (low grade) or aggressive (intermediate and high grade) lymphomas. Aggressive NHLs are typically treated with multi-agent chemotherapy regimens with or without radiation. Treatment also may involve bone marrow/stem cell transplantation. As a result of such aggressive therapy, NHL survivors often experience significant long-term and/or late effects of their treatment over a period of several months and sometimes years following therapy. These effects can negatively affect their health-related quality of life (HRQOL).

Survivors of aggressive NHL who have completed initial therapy require significant amounts of follow-up care in order to treat long-term or late effects of cancer therapy and to monitor for disease progression. However, the quality of follow-up care provided to these survivors, or their health outcomes, especially their HRQOL, has been understudied. Recognizing the importance of such evaluations, NCI's Leukemia, Lymphoma, and Myeloma Progress Review Group (LLMPRG) identified several population-based studies as priorities for future research. They recommended that studies should:

• assess the quality of care and quality of life outcomes of hematological cancer patients as they move through the phases of active treatment and maintenance; and
• examine the incidence, prevalence, and impact of adverse long-term outcomes among survivors of hematological cancer survivors.

To address the recommendations of the LLMPRG and to better understand the follow-up care experiences of survivors of aggressive NHL as well their health outcomes, ORB conducted the Experience of Care and Health Outcomes of Survivors of Non-Hodgkin's Lymphoma (ECHOS-NHL) study, funded as part of the SEER Rapid Response Surveillance Study contract mechanism.