Publication Abstract

Authors: Arora NK, Hamilton AS, Potosky AL, Rowland JH, Aziz NM, Bellizzi KM, Klabunde CN, McLaughlin W, Stevens J

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

Journal: J Cancer Surviv 1(1):49-63

Date: 2007 Mar

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=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.