Cancer survivorship research: the challenge of recruiting adult long term cancer survivors from a cooperative clinical trials group
With the growing number of adult cancer survivors, there is increasing need for information that links potential late and long term effects with specific treatment regimens. Few adult cancer patients are treated on clinical trials; however, patients previously enrolled in these trials are an important source of information about treatment-related late effects.
Focusing on colorectal cancer survivors, we used the database from five phase III randomized clinical trials from the National Surgical Adjuvant Breast & Bowel Project (NSABP) to recruit and enroll long term survivors in a study of late health outcomes and quality of life. We describe the challenges to recruitment of patients more than 5 –20 years after treatment.
Sixty-five NSABP treatment sites were invited to enroll patients in the study. Sixty participated with the potential to recruit 2,408 patients. We received registration forms on only 976 patients (41%) of whom 744 (76%) expressed interest in participating and 708 completed interviews (95% of those expressing interest; 29% of total potential sample). There were multiple barriers to recruitment (difficulty locating patients, lack of institutional commitment, lack of patient interest).
Patients treated on clinical trials are an important potential source for examining the late effects of cancer treatments. Retrospective recruitment has substantial limitations. In the future, mechanisms should be established for prospective long-term follow-up to identify and understand the frequency and type of late effects associated with cancer treatments.
Implications for Cancer Survivors
As cancer patients are living longer, it will be important to learn from participants in clinical trials whether or not specific treatment regimens are associated with any serious late effects.
- Hewitt, M, Greenfield, S, Stovall, E (2006) From Cancer Patient to Cancer Survivor: Lost in Transition. The National Academies, Washington, D.C
- Bower, JE, Ganz, PA, Desmond, KA, Rowland, JH, Meyerowitz, BE, Belin, TR (2000) Fatigue in breast cancer survivors: occurrence, correlates, and impact on quality of life. J Clin Oncol 18: pp. 743-753
- Dow, KH, Ferrell, BR, Leigh, S, Ly, J, Gulasekaram, P (1996) An evaluation of the quality of life among long-term survivors of breast cancer. Breast Cancer Res Treat 39: pp. 261-273 CrossRef
- Ganz, PA, Greendale, GA, Petersen, L, Kahn, B, Bower, JE (2003) Breast Cancer in Younger Women: Reproductive and Late Health Effects of Treatment. J Clin Oncol 21: pp. 4184-4193 CrossRef
- Ramsey, SD, Berry, K, Moinpour, C, Giedzinska, A, Andersen, MR (2002) Quality of life in long term survivors of colorectal cancer. Am J gastroenterol 97: pp. 1228-1234 CrossRef
- Janov, AJ, Anderson, J, Cella, DF, Zuckerman, E, Kornblith, AB, Holland, JC (1992) Pregnancy outcome in survivors of advanced Hodgkin disease. Cancer 70: pp. 688-692 CrossRef
- Kornblith, AB, Anderson, J, Cella, DF, Tross, S, Zuckerman, E, Cherin, E (1992) Comparison of psychosocial adaptation and sexual function of survivors of advanced Hodgkin disease treated by MOPP, ABVD, or MOPP alternating with ABVD. Cancer 70: pp. 2508-2516 CrossRef
- Tross, S, Herndon, J, Korzun, A, Kornblith, AB, Cella, DF, Holland, JF (1996) Psychological symptoms and disease-free and overall survival in women with stage II breast cancer. Cancer and Leukemia Group B. J Natl Cancer Inst 88: pp. 661-667 CrossRef
- Ganz PA, Hussey MA, Moinpour CM, Unger JM, Hutchins LF, Dakhil SR et al. Late Cardiac Effects of Adjuvant Chemotherapy in Breast Cancer Survivors Treated on Southwest Oncology Group Protocol S8897. J Clin Oncol 2008;JCO.
- Ramsey, SD, Andersen, MR, Etzioni, R, Moinpour, C, Peacock, S, Potosky, A (2000) Quality of life in survivors of colorectal carcinoma. Cancer 88: pp. 1294-1303 CrossRef
- Schag, CA, Ganz, PA, Wing, DS, Sim, MS, Lee, JJ (1994) Quality of life in adult survivors of lung, colon and prostate cancer. Qual Life Res 3: pp. 127-141 CrossRef
- Andersen, RM (1995) Revisiting the behavioral model and access to medical care: does it matter?. J Health Soc Behav 36: pp. 1-10 CrossRef
- Giordano, SH, Duan, Z, Kuo, YF, Hortobagyi, GN, Goodwin, JS (2006) Use and Outcomes of Adjuvant Chemotherapy in Older Women With Breast Cancer. J Clin Oncol 24: pp. 2750-2756 CrossRef
- Patt, DA, Goodwin, JS, Kuo, YF, Freeman, JL, Zhang, DD, Buchholz, TA (2005) Cardiac Morbidity of Adjuvant Radiotherapy for Breast Cancer. J Clin Oncol 23: pp. 7475-7482 CrossRef
- Leeuwen, FE, Klokman, WJ, Veer, MB, Hagenbeek, A, Krol, ADG, Vetter, UAO (2000) Long-Term Risk of Second Malignancy in Survivors of HodgkinÆs Disease Treated During Adolescence or Young Adulthood. J Clin Oncol 18: pp. 487
- Belt-Dusebout, A, Wit, R, Gietema, JA, Horenblas, S, Louwman, MWJ, Ribot, JG (2007) Treatment-Specific Risks of Second Malignancies and Cardiovascular Disease in 5-Year Survivors of Testicular Cancer. J Clin Oncol 25: pp. 4370-4378 CrossRef
- Champion, V, Williams, SD, Miller, A, Reuille, KM, Wagler-Ziner, K, Monahan, PO (2007) Quality of life in long-term survivors of ovarian germ cell tumors: A Gynecologic Oncology Group Study. Gynecol Oncol 105: pp. 687-694 CrossRef
- Paskett, ED, Herndon, JE, Day, JM, Stark, NN, Winer, EP, Grubbs, SS (2008) Applying a conceptual model for examining health-related quality of life in long-term breast cancer survivors: CALGB study 79804. Psycho-Oncol 17: pp. 1108-1120 CrossRef
- Ganz, PA, Hussey, MA, Moinpour, CM, Unger, JM, Hutchins, LF, Dakhil, SR (2008) Late Cardiac Effects of Adjuvant Chemotherapy in Breast Cancer Survivors Treated on Southwest Oncology Group Protocol S8897. J Clin Oncol 26: pp. 1223-1230 CrossRef
- Cancer survivorship research: the challenge of recruiting adult long term cancer survivors from a cooperative clinical trials group
- Open Access
- Available under Open Access This content is freely available online to anyone, anywhere at any time.
Journal of Cancer Survivorship
Volume 3, Issue 3 , pp 137-147
- Cover Date
- Print ISSN
- Online ISSN
- Springer US
- Additional Links
- Colorectal cancer survivors
- Clinical trials
- Recruitment barriers
- Industry Sectors
- Author Affiliations
- 1. School of Public Health & David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, CA, USA
- 2. Division of Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center, University of California, Los Angeles, Los Angeles, CA, USA
- 3. National Surgical Adjuvant Breast & Bowel Project (NSABP), Biostatistical Center, Pittsburgh, PA, USA
- 4. Department of Biostatistics, Graduate School of Public Health, University of Pittsburgh, Pittsburgh, PA, USA
- 5. National Surgical Adjuvant Breast & Bowel Project (NSABP), Operations Center, Pittsburgh, PA, USA
- 6. Department of Human Oncology, Allegheny General Hospital, Pittsburgh, PA, USA
- 7. UCLA Department of Surgery, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA
- 8. Department of Surgery, West Los Angeles Veterans Affairs Medical Center, Los Angeles, CA, USA