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Journal of Cancer Survivorship
Published in: Journal of Cancer Survivorship 1/2007

01-03-2007

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

Authors: Neeraj K. Arora, Ann S. Hamilton, Arnold L. Potosky, Julia H. Rowland, Noreen M. Aziz, Keith M. Bellizzi, Carrie N. Klabunde, Wendy McLaughlin, Jennifer Stevens

Published in: Journal of Cancer Survivorship | Issue 1/2007

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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.
Literature
1.
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.PubMedCrossRef
2.
American Cancer Society (2006). Cancer facts and figures 2006. Atlanta, GA: American Cancer Society.
3.
Andersen, R. (1995). Revisiting the behavioral model and access to medical care: Does it matter? Journal of Health and Social Behavior, 36, 1–10.PubMedCrossRef
4.
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.PubMedCrossRef
5.
Ayanian, J. Z., & Jacobsen, P. B. (2006). Enhancing research on cancer survivors. Journal of Clinical Oncology, 24, 5149–5153.PubMedCrossRef
6.
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.
7.
Aziz, N. M., & Rowland, J. H. (2003). Trends and advances in cancer survivorship research: Challenge and opportunity. Seminars in Radiation Oncology, 13, 248–266.PubMedCrossRef
8.
Baker, F., Denniston, M., Smith, T., & West, M. M. (2005). Adult cancer survivors: How are they faring? Cancer, 104(11), 2565–2576. (Suppl)PubMedCrossRef
9.
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.PubMedCrossRef
10.
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.PubMed
11.
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.PubMedCrossRef
12.
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.PubMed
13.
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.PubMedCrossRef
14.
Fernsler, J., & Fanuele, J. S. (1998). Lymphomas: Long-term sequelae and survivorship issues. Seminars in Oncology Nursing, 14, 321–328.PubMedCrossRef
15.
Fisher, S. G., & Fisher, R. I. (2004). The epidemiology of non-Hodgkin’s Lymphoma. Oncogene, 23, 6524–6534.PubMedCrossRef
16.
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.PubMedCrossRef
17.
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.PubMedCrossRef
18.
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.PubMed
19.
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.PubMed
20.
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.PubMedCrossRef
21.
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.
22.
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.PubMedCrossRef
23.
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.PubMedCrossRef
24.
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.PubMedCrossRef
25.
Institute of Medicine (2006). From cancer patient to cancer survivor: Lost in transition. Washington, DC: National Academy.
26.
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.PubMedCrossRef
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.PubMedCrossRef
28.
Johnston, L. (1999). Non-Hodgkin’s lymphomas: Making sense of diagnosis, treatment & options. Sebastopol, CA: O’Reilly.
29.
Kessler, T. (1998). The cognitive appraisal of health scale: Development and psychometric evaluation. Research in Nursing & Health, 21, 73–82.CrossRef
30.
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.CrossRef
31.
Lazarus, R., & Folkman, S. (1984). Appraisal, stress, and coping. Berlin Heidelberg New York: Springer.
32.
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.CrossRef
33.
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.PubMedCrossRef
34.
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.PubMedCrossRef
35.
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.PubMedCrossRef
36.
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.PubMedCrossRef
37.
38.
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.
39.
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.PubMedCrossRef
40.
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.PubMedCrossRef
41.
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.PubMedCrossRef
42.
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.PubMedCrossRef
43.
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.PubMedCrossRef
44.
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.PubMedCrossRef
45.
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.PubMedCrossRef
46.
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.PubMedCrossRef
47.
Sehn, L., & Connors, J. (2005). Treatment of aggressive non-Hodgkin’s lymphoma: A North American perspective. Oncology, 19(Supl 1), 27–34.
48.
Sherbourne, C., & Stewart, A. (1991). The MOS social support survey. Social Science & Medicine, 32, 705–714.CrossRef
49.
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.CrossRefPubMed
50.
Smith, M., Wallston, K., & Smith, C. (1995). The development and validation of the Perceived Health Competence Scale. Health Education Research, 10, 51–64.PubMedCrossRef
51.
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.PubMedCrossRef
52.
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.PubMedCrossRef
53.
Stat Bite (2006). Number of cancer survivors by site, 2003. Journal of the National Cancer Institute, 98, 1514.
54.
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.PubMed
55.
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.CrossRef
56.
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.PubMedCrossRef
57.
The International Non-Hodgkin’s Lymphoma Prognostic Factors Project (1993). A predictive model for aggressive non-Hodgkin’s lymphoma. NEJM, 329, 987–994.CrossRef
58.
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.CrossRef
59.
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.PubMedCrossRef
60.
Ware, J. J., Kosinski, M., & Dewey, J. (2000). How to score version 2 of the SF-36® health survey. Lincoln, RI: QualityMetric Incorporated.
61.
Ware, J. J., Kosinski, M., & Gandek, B. (2000). SF-36® Health survey: Manual & interpretation guide. Lincoln, RI: QualityMetric Incorporated.
62.
Wilson, I., & Cleary, P. (1995). Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA, 273, 59–65.PubMedCrossRef
63.
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.PubMedCrossRef
64.
Zigmond, A., & Snaith, R. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67, 361–370.PubMed
Metadata
Title
Population-based survivorship research using cancer registries: a study of non-Hodgkin’s Lymphoma survivors
Authors
Neeraj K. Arora
Ann S. Hamilton
Arnold L. Potosky
Julia H. Rowland
Noreen M. Aziz
Keith M. Bellizzi
Carrie N. Klabunde
Wendy McLaughlin
Jennifer Stevens
Publication date
01-03-2007
Published in
Journal of Cancer Survivorship / Issue 1/2007
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI
https://doi.org/10.1007/s11764-007-0004-3

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