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Multicenter Study
. 2009 Sep;3(3):137-47.
doi: 10.1007/s11764-009-0093-2. Epub 2009 Jun 13.

Cancer survivorship research: the challenge of recruiting adult long term cancer survivors from a cooperative clinical trials group

Patricia A Ganz  1 , Stephanie R Land, Cynthia Antonio, Ping Zheng, Greg Yothers, Laura Petersen, D Lawrence Wickerham, N Wolmark, Clifford Y Ko
Affiliations
Multicenter Study

Cancer survivorship research: the challenge of recruiting adult long term cancer survivors from a cooperative clinical trials group

Patricia A Ganz et al. J Cancer Surviv. 2009 Sep.

Abstract

Introduction: 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.

Methods: 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.

Results: 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).

Conclusions: 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.

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Figures

Fig. 1
Fig. 1
Overview of study procedures reflecting collaboration between NSABP, UCLA, and the NSABP Member Institutions (clinical sites). CATI = computer-assisted telephone interview.
Fig. 2
Fig. 2
Cumulative frequencies of accrued institutions with IRB approval.
Fig. 3
Fig. 3
Flow diagram of institutional and patient recruitment.
Fig. 4
Fig. 4
Rate of successful accrual by number of eligible patients for 60 institutions with IRB approval.
See this image and copyright information in PMC

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