title: Population-based survivorship research using cancer registries: a study of non-Hodgkin's lymphoma survivors.
abstract: BACKGROUND
  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.
  
  
  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.
authors.affiliation: 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
authors.forename: Neeraj K
authors.initials: NK
authors.lastname: Arora
authors.forename: Ann S
authors.initials: AS
authors.lastname: Hamilton
authors.forename: Arnold L
authors.initials: AL
authors.lastname: Potosky
authors.forename: Julia H
authors.initials: JH
authors.lastname: Rowland
authors.forename: Noreen M
authors.initials: NM
authors.lastname: Aziz
authors.forename: Keith M
authors.initials: KM
authors.lastname: Bellizzi
authors.forename: Carrie N
authors.initials: CN
authors.lastname: Klabunde
authors.forename: Wendy
authors.initials: W
authors.lastname: McLaughlin
authors.forename: Jennifer
authors.initials: J
authors.lastname: Stevens
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D006304:Health Status; D006306:Health Surveys; D006801:Humans; D015141:Los Angeles; D008228:Lymphoma, Non-Hodgkin / Q000150:complications* / Q000175:diagnosis / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012042:Registries / Q000706:statistics & numerical data*; D012107:Research Design; D011795:Surveys and Questionnaires; D017741:Survivors / Q000706:statistics & numerical data*; D016896:Treatment Outcome