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

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

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.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Adult
  • Aged
  • Female
  • Health Status*
  • Health Surveys
  • Humans
  • Los Angeles
  • Lymphoma, Non-Hodgkin / complications*
  • Lymphoma, Non-Hodgkin / diagnosis
  • Lymphoma, Non-Hodgkin / psychology*
  • Male
  • Middle Aged
  • Quality of Life
  • Registries / statistics & numerical data*
  • Research Design*
  • Surveys and Questionnaires
  • Survivors / statistics & numerical data*
  • Treatment Outcome