Experiences of Care & Health Outcomes of Survivors of non-Hodgkin's Lymphoma Study (ECHOS-NHL) Study

Background

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.

Study Overview

This population-based SEER study was conducted in collaboration with researchers at the University of Southern California and the Los Angeles County Cancer Surveillance Program's SEER registryExternal Web Site Policy, which provided the sampling frame. Data were collected through a cross-sectional survey mailed to eligible survivors of aggressive NHL who were diagnosed 2-5 years before the study (diagnosis dates ranged from June 1, 1998 to August 31, 2001). The majority of the surveys were mailed between April and August, 2003; a small second wave of data was collected between April and July, 2005.

All survey items went through two rounds of cognitive testing to ensure that they were clearly understood and reliably interpreted by potential respondents. A small pilot test was conducted with 32 survivors of aggressive NHL before the final field administration of the survey.

Of the 744 survivors eligible to participate in the study, 408 (54.8%) responded to the survey; 319 returned the mailed survey and 89 answered a shorter version of the survey by telephone. Complete or partial medical record data were obtained for 244 of the 408 survey respondents.

Details on the sampling design, sample characteristics, conceptual framework and content of the survey are presented in Arora, Hamilton, Potosky, et al. (2007)Icon indicating linked file is archived content.

Topic Areas

The ECHOS-NHL survey addressed the following areas:

  • Follow-up Cancer Care
    • frequency and nature of health care visits, specialty of physicians seen, length of survivor-physician relationship, and physicians' communication behavior;
    • attitude toward follow-up care;
    • overall rating of and satisfaction with care; and
    • preference for discussing psychosocial problems with follow-up care physician.
  • Late Effects of Medical Treatment
    • late effect versus pre-cancer co-morbid status of 41 medical conditions; and
    • women's health.
  • Cognitive Appraisal
    • risk perception, personal control, perceived health competence, optimism; and
    • perceived life change due to cancer.
  • Symptoms and Health-related Quality of Life
    • physical symptoms;
    • physical and mental health summary scores;
    • depression and anxiety;
    • fatigue;
    • sexual functioning; and
    • cognitive functioning.
  • Health Behaviors
    • physical activity, smoking, alcohol consumption; and
    • use of complementary and alternative medicines (CAM).
  • Cancer-related Information Needs
  • Social Support
  • Sociodemographic and Clinical Information

Status

The ECHOS-NHL study has ended.

Data collection has been completed and analyses are underway. To date, a number of presentations have been made using ECHOS-NHL data at national and international conferences. Several research manuscripts have been published or accepted for publication in peer-reviewed journals, and several additional manuscripts are in preparation.

ECHOS-NHL Survey Instrument and Code Books