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 ≤ 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 (≥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.
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References
Affleck, G., Tennen, H., Pfeiffer, C., & Fifield, J. (1987). Appraisals of control and predictability in adapting to a chronic illness. Journal of Personality and Social Psychology, 53, 273–279.
American Cancer Society (2006). Cancer facts and figures 2006. Atlanta, GA: American Cancer Society.
Andersen, R. (1995). Revisiting the behavioral model and access to medical care: Does it matter? Journal of Health and Social Behavior, 36, 1–10.
Andre, M., Mounier, N., Leleu, X., Sonet, A., Brice, P., Henry-Amar, M., et al. (2004). Second cancers and late toxicities after treatment of aggressive non-Hodgkin lymphoma with the ACVBP regimen: A GELA cohort study on 2837 patients. Blood, 103, 1222–1228.
Ayanian, J. Z., & Jacobsen, P. B. (2006). Enhancing research on cancer survivors. Journal of Clinical Oncology, 24, 5149–5153.
Aziz, N. M. (2006). Late effects of cancer treatments: surgery, radiation therapy, chemotherapy. Chapter 101. In A. E. Chang, P. A. Ganz, D. F. Hayes, T. Kinsella, H. I. Pass, J. H. Schiller, R. Stone, & V. Strecher (Eds.), Oncology: An evidence-based approach. Berlin Heidelberg New York: Springer.
Aziz, N. M., & Rowland, J. H. (2003). Trends and advances in cancer survivorship research: Challenge and opportunity. Seminars in Radiation Oncology, 13, 248–266.
Baker, F., Denniston, M., Smith, T., & West, M. M. (2005). Adult cancer survivors: How are they faring? Cancer, 104(11), 2565–2576. (Suppl)
Brennan, P., Scelo, G., Hemminki, K., Mellemkjaer, L., Tracey, E., Andersen, A., et al. (2005). Second primary cancers among 109000 cases of non-Hodgkin’s lymphoma. British Journal of Cancer, 93, 159–166.
de Haes, J., van Knippenberg, F., & Neijt, J. (1990). Measuring psychological and physical distress in cancer patients: Structure and application of the Rotterdam Symptom Checklist. British Journal of Cancer, 62, 1034–1038.
Demark-Wahnefried, W., Aziz, N. M., Rowland, J. H., & Pinto, B. M. (2005). Riding the crest of the teachable moment: Promoting long-term health after the diagnosis of cancer. Journal of Clinical Oncology, 23, 5814–5830.
Detmar, S., Aaronson, N., Wever, L., Muller, M., & Schornagel, J. (2000). How are you feeling? Who wants to know? Patients’ and oncologists’ preferences for discussing health-related quality-of-life issues. Journal of Clinical Oncology, 18, 3295–3301.
Doorduijn, J., Buijt, I., Holt, B., Steijaert, M., Uyl-de Groot, C., & Sonneveld, P. (2005). Self-reported quality of life in elderly patients with aggressive non-Hodgkin’s lymphoma treated with CHOP chemotherapy. European Journal of Haematology, 75, 116–123.
Fernsler, J., & Fanuele, J. S. (1998). Lymphomas: Long-term sequelae and survivorship issues. Seminars in Oncology Nursing, 14, 321–328.
Fisher, S. G., & Fisher, R. I. (2004). The epidemiology of non-Hodgkin’s Lymphoma. Oncogene, 23, 6524–6534.
Ganz, P. A. (2003). Why and how to study the fate of cancer survivors: Observations from the clinic and the research laboratory. European Journal of Cancer, 39, 2136–2141.
Ganz, P., Day, R., Ware, J., Redmond, C., & Fisher, B. (1995). Base-line quality-of-life assessment in the National Surgical Adjuvant Breast and Bowel Project Breast Cancer Prevention Trial. Journal of the National Cancer Institute, 87, 1372–1383.
Ganz, P., Desmond, K., Leedham, B., Rowland, J., Meyerowitz, B., & Belin, T. (2002). Quality of life in long-term, disease-free survivors of breast cancer: A follow-up study. Journal of the National Cancer Institute, 94, 39–49.
Ganz, P. A., Rowland, J. H., Desmond, K., Meyerowitz, B. E., & Wyatt, G. E. (1998). Life after breast cancer: Understanding women’s health-related quality of life and sexual functioning. Journal of Clinical Oncology, 16, 501–514.
Goodwin, P. J., Leszcz, M., Ennis, M., Koopmans, J., Vincent, L., Guther, H., et al. (2001). The effect of group psychosocial support on survival in metastatic breast cancer. New England Journal of Medicine, 345, 1719–1726.
Hamilton, A., Cockburn, M., Chen, X., & Deapen, D. (2005). Factors associated with the use of complementary and alternative medicine by cancer patients in Los Angeles County. Journal of Cancer Integrative Medicine, 3, 51–61.
Hann, D. M., Jacobsen, P. B., Azzarello, L. M., Martin, S. C., Curran, S. L., Fields, K. K., et al. (1998). Measurement of fatigue in cancer patients: Development and validation of the fatigue symptom inventory. Quality of Life Research, 7, 301–310.
Hargraves, J., Hays, R., & Cleary, P. (2003). Psychometric properties of the Consumer Assessment of Health Plans Study (CAHPS) 2.0 adult core survey. Health Services Research, 38, 1509–1527.
Hawkins, S., Cockburn, M., Hamilton, A., & Mack, T. (2004). An estimate of physical activity prevalence in a large population-based cohort. Medicine and Science in Sports and Exercise, 36, 253–260.
Institute of Medicine (2006). From cancer patient to cancer survivor: Lost in transition. Washington, DC: National Academy.
Jemal, A., Clegg, L. X., Ward, E., Ries, L. A., Wu, X., Jamison, P. M., et al. (2004). Annual report to the nation on the status of cancer, 1975–2001, with a special feature regarding survival. Cancer, 101, 3–27.
Jerkeman, M., Kaasa, S., Hjermstad, M., Kvaloy, S., & Cavallin-Stahl, E. (2001). Health-related quality of life and its potential prognostic implications in patients with aggressive lymphoma: A Nordic Lymphoma Group Trial. Medical Oncology, 18, 85–94.
Johnston, L. (1999). Non-Hodgkin’s lymphomas: Making sense of diagnosis, treatment & options. Sebastopol, CA: O’Reilly.
Kessler, T. (1998). The cognitive appraisal of health scale: Development and psychometric evaluation. Research in Nursing & Health, 21, 73–82.
Kouroukis, T., Meyer, R., Benger, A., Marcellus, D., Foley, R., & Browman, G. (2004). An evaluation of age-related differences in quality of life preferences in patients with non-Hodgkin’s lymphoma. Leukemia & Lymphoma, 45, 2471–2476.
Lazarus, R., & Folkman, S. (1984). Appraisal, stress, and coping. Berlin Heidelberg New York: Springer.
Lee, V., Robin Cohen, S., Edgar, L., Laizner, A. M., & Gagnon, A. J. (2006). Meaning-making intervention during breast or colorectal cancer treatment improves self-esteem, optimism, and self-efficacy. Social Science & Medicine, 62, 3133–3145.
Malin, J. L., Ko, C., Ayanian, J. Z., Harrington, D., Nerenz, D. R., Kahn, K. L., et al. (2006). Understanding cancer patients’ experience and outcomes: Development and pilot study of the Cancer Care Outcomes Research and Surveillance patient survey. Support Care Cancer, 14, 837–848.
Manne, S., & Glassman, M. (2000). Perceived control, coping efficacy, and avoidance coping as mediators between spouses’ unsupportive behaviors and cancer patients’ psychological distress. Health Psychology, 19, 155–164.
Maunsell, E., Drolet, M., Ouhoummane, N., & Robert, J. (2005). Breast cancer survivors accurately reported key treatment and prognostic characteristics. Journal of Clinical Epidemiology, 58, 364–369.
McCorkle, R., Tang, S. T., Greenwald, H., Holcombe, G., & Lavery, M. (2006). Factors related to depressive symptoms among long term survivors of cervical cancer. Health Care for Women International, 27, 45–58.
National Cancer Institute. Report of the Leukemia, Lymphoma, and Myeloma Progress Review Group. 2001. http://planning.cancer.gov/disease/plans.shtml#prg.
National Center for Health Statistics, Division of Health Interview Statistics: 2000 National Health Interview Survey (NHIS) Public Use Data Release: NHIS Survey Description. Hyattsville, MD, U.S. Department of Health and Human Services, Center for Disease Control and Prevention, March 2002.
Nelson, D. E., Kreps, G. L., Hesse, B. W., Croyle, R. T., Willis, G., Arora, N. K., et al. (2004). The Health Information National Trends Survey (HINTS): Development, design, and dissemination. Journal of Health Communication, 9, 443–460, discussion 81–84.
Pakilit, A. T., Kahn, B. A., Petersen, L., Abraham, L. S., Greendale, G. A., & Ganz, P. A. (2001). Making effective use of tumor registries for cancer survivorship research. Cancer, 92, 1305–1314.
Portenoy, R. K., Thaler, H. T., Kornblith, A. B., Lepore, J. M., Friedlander-Klar, H., Kiyasu, E., et al. (1994). The memorial symptom assessment scale: An instrument for the evaluation of symptom prevalence, characteristics and distress. European Journal of Cancer, 30A, 1326–1336.
Potosky, A. L., Davis, W. W., Hoffman, R. M., Stanford, J. L., Stephenson R. A., Penson, D. F., et al. (2004). Five year outcomes after prostatectomy or radiotherapy for prostate cancer: The prostate cancer outcomes study. Journal of the National Cancer Institute, 96, 1358–1367.
Potosky, A., Harlan, L., Stanford, J., Gilliland, F., Hamilton, A., Albertsen, P. C., et al. (1999). Prostate cancer practice patterns and quality of life: The Prostate Cancer Outcomes Study. Journal of the National Cancer Institute, 91, 1719–1724.
Revicki, D., Sorensen, S., & Wu, A. (1998). Reliability and validity of physical and mental health summary scores from the Medical Outcomes Study HIV Health Survey. Medical Care, 36, 126–137.
Robison, L., Mertens, A., Boice, J., Breslow, N., Donaldson, S., Green, D. M., et al. (2002). Study design and cohort characteristics of the Childhood Cancer Survivor Study: A multi-institutional collaborative project. Medical and Pediatric Oncology, 38, 229–239.
Scheier, M., Carver, C., & Bridges, M. (1994). Distinguishing optimism from neuroticism (and trait anxiety, self-mastery, and self-esteem): A reevaluation of the Life Orientation Test. Journal of Personality and Social Psychology, 67, 1063–1078.
Sehn, L., & Connors, J. (2005). Treatment of aggressive non-Hodgkin’s lymphoma: A North American perspective. Oncology, 19(Supl 1), 27–34.
Sherbourne, C., & Stewart, A. (1991). The MOS social support survey. Social Science & Medicine, 32, 705–714.
Shields, C. G., Morrow, G. R., Griggs, J. J., Mallinger, J., Roscoe, J. A., Wade, J. L., et al. (2004). Decision role preferences of patients receiving adjuvant cancer treatment: A university of Rochester Cancer Center Community Clinical Oncology Program. Supportive Cancer Therapy, 1, 119–126.
Smith, M., Wallston, K., & Smith, C. (1995). The development and validation of the Perceived Health Competence Scale. Health Education Research, 10, 51–64.
Spiegel, D., Bloom, J. R., Kraemer, H. C., & Gottheil, E. (1989). Effect of psychosocial treatment on survival of patients with metastatic breast cancer. Lancet, 2, 888–891.
Stanford, J. L., Feng, Z., Hamilton, A. S., Gilliland, F. D., Stephenson, R. A., Eley, J. W., et al. (2000). Urinary and sexual function after radical prostatectomy for clinically localized prostate cancer: The Prostate Cancer Outcomes Study. JAMA, 283, 354–360.
Stat Bite (2006). Number of cancer survivors by site, 2003. Journal of the National Cancer Institute, 98, 1514.
Stiggelbout, A., de Haes, J., Vree, R., van de Velde, C., Bruijninckx, C., van Groningen, K., et al. (1997). Follow-up of colorectal cancer patients: Quality of life and attitudes towards follow-up. British Journal of Cancer, 75, 914–920.
Syrjala, K. L., Schroeder, T. C., Abrams, J. R., Atkins, T. Z., Brown, W. S., Sanders, J. E., et al. (2000). Sexual function measurement and outcomes in cancer survivors and matched controls. Journal of Sex Research, 37, 213–225.
Tchen, N., Soubeyran, P., Eghbali, H., Ceccaldi, J., Cany, L., Balzon, J. C., et al. (2002). Quality of life in patients with aggressive non-Hodgkin’s lymphoma. Validation of the medical outcomes study short form 20 and the Rotterdam symptom checklist in older patients. Critical Reviews in Oncology/Hematology, 43, 219–226.
The International Non-Hodgkin’s Lymphoma Prognostic Factors Project (1993). A predictive model for aggressive non-Hodgkin’s lymphoma. NEJM, 329, 987–994.
The Non-Hodgkin’s Lymphoma Pathologic Classification Project (1982). National Cancer Institute sponsored study of classifications of non-Hodgkin’s lymphomas: Summary and description of a working formulation for clinical usage. Cancer, 49, 2112–2135.
Thirlaway, K., Fallowfield, L., & Cuzick, J. (1996). The sexual activity questionnaire: A measure of women’s sexual functioning. Quality of Life Research, 5, 81–90.
Ware, J. J., Kosinski, M., & Dewey, J. (2000). How to score version 2 of the SF-36® health survey. Lincoln, RI: QualityMetric Incorporated.
Ware, J. J., Kosinski, M., & Gandek, B. (2000). SF-36® Health survey: Manual & interpretation guide. Lincoln, RI: QualityMetric Incorporated.
Wilson, I., & Cleary, P. (1995). Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA, 273, 59–65.
Wu, A. W., Rubin, H. R., Mathews, W. C., Ware, J. E. Jr., Brysk, L. T., Hardy, W. D., et al. (1991). A health status questionnaire using 30 items from the Medical Outcomes Study. Preliminary validation in persons with early HIV infection. Medical Care, 29, 786–798.
Zigmond, A., & Snaith, R. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67, 361–370.
Acknowledgment
The collection of cancer incidence data used in this study was supported by the California Department of Health Services (CADHS) as part of the statewide cancer reporting program mandated by California Health and Safety Code Section 103885; the National Cancer Institutes (NCI) Surveillance, Epidemiology and End Results Program under contract N01-PC-35139 awarded to the University of Southern California, and contract N02-PC-15105 awarded to the Public Health Institute (PHI); and the Centers for Disease Control and Prevention’s (CDC) National Program of Cancer Registries, under agreement no. U55/CCR921930-02 awarded to the PHI. The ideas and opinions expressed herein are those of the authors and endorsement by the CADHS, the NCI, and the CDC or their contractors and subcontractors is not intended nor should be inferred.
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Arora, N.K., Hamilton, A.S., Potosky, A.L. et al. Population-based survivorship research using cancer registries: a study of non-Hodgkin’s Lymphoma survivors. J Cancer Surviv 1, 49–63 (2007). https://doi.org/10.1007/s11764-007-0004-3
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DOI: https://doi.org/10.1007/s11764-007-0004-3