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J Cancer Surviv. 2007 Mar;1(1):49-63. doi: 10.1007/s11764-007-0004-3.

Population-based survivorship research using cancer registries: a study of non-Hodgkin's lymphoma survivors.

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1
Division of Cancer Control and Population Sciences, National Cancer Institute, 6130 Executive Blvd, MSC 7344, Executive Plaza North #4005, Bethesda, MD 20892-7344, USA. aroran@mail.nih.gov

Abstract

INTRODUCTION:

Several recent reports have recommended use of population-based cancer registries for evaluating the long-term health outcomes of cancer survivors. Drawing upon experiences from a study of survivors of non-Hodgkin's Lymphoma (NHL), we discuss conceptual and methodological challenges to and opportunities for conducting population-based survivorship research using cancer registries.

MATERIALS AND METHODS:

Survivors of aggressive NHL diagnosed between June 1998 and August 2001, 2-5 years prior to the study, were sampled from the Los Angeles Surveillance Epidemiology and End Results (SEER) registry. A conceptual framework was developed to systematically evaluate the association of sociodemographic, clinical, social, psychological, and behavioral factors with survivors' health-related quality of life. Data were collected primarily by a mailed questionnaire; medical records were also abstracted.

RESULTS:

Of 744 eligible survivors identified from the registry, 181 (24.3%) were lost to follow-up; 408 responded to the questionnaire (54.8%); 155 (20.8%) refused. Those lost to follow-up included a significantly higher proportion of younger, male, and Hispanic survivors compared to the other two groups (P <or= 0.01). There were no sociodemographic or clinical differences among the questionnaire respondents and survivors who refused study participation. Medical records were abstracted for 59.8% of the respondents. A high percentage of agreement was seen between survivors' self-report and medical record documentation of key treatments and disease status (>or=95% for survivors with complete records).

CONCLUSIONS:

The cancer registry served as a valuable resource for recruiting one of the largest population-based samples of NHL survivors. The methodology and example of a conceptual framework utilized in this study provide a model for future population-based cancer survivorship research.

PMID:
18648945
DOI:
10.1007/s11764-007-0004-3
[Indexed for MEDLINE]
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