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

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 treatmentrelated 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.

Reliability testing of oxaliplatin-associated neurotoxicity questionnaire (OANQ), a pilot study

“…To make generalizations from a study's results a probability sampling, such as randomized sampling, is needed (32). The recruitment of cancer patients was challenging, which has also been seen and highlighted in previous studies (33)(34)(35). This group of patients are often frail, undergoing tough and demanding treatment regimens and also undergoing the psychological trauma of a potential life threat.…”

Methods to Assess Adverse Health-Related Outcomes in Cancer Survivors

“…The major limitations of such studies are that they do not account for selection bias in who gets specific cancer treatments, and there is limited data on prognostic factors and comorbidities that must often be inferred from coded diagnoses and billing documents, rather than from clinical information in the medical record. Furthermore, doses of chemotherapy or radiation are typically not available (12), and this method may be restricted to certain age groups (e.g., the elderly population enrolled in U.S. Medicare). Lastly, the outcome of interest may be underreported if survivors migrate out of the catchment area under surveillance.…”

“…The main endpoints of interest in most clinical trials are treatment response and survival, and long-term followup data on other outcomes tend to be very incomplete (and potentially biased). Ganz described the challenges to long-term studies conducted through cooperative groups, including exclusion of patients with known comorbidities, lack of racial/ethnic diversity, and high loss-tofollow-up rates (12). However, as illustrated by Bhatia and colleagues from the Children's Oncology Group, the accurate ascertainment of early occurring second malignancies, such as treatment-related leukemia, can be successfully accomplished within the cooperative group setting (13).…”

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“…However, they remain an understudied and underrepresented population in cancer research in part due to the persistent challenge of low recruitment rates. Despite researcher's persistent efforts, traditional recruitment strategies such as utilizing physician referrals, purchasing newspaper ads, and using cancer registries have resulted in mixed results [3,4]. The low recruitment rates of ethnic minority cancer survivors in cancer research remain a concern and the low rates of participation also call into question the generalizability and applicability of extant findings and interventions for this population.…”

“…There are many reasons for the low participation rate of ethnic minority cancer survivors in research. These reasons may include language barriers [7], low socioeconomic status, lack of health insurance and access to care [8], cultural barriers such as distrust of researchers [9], and stigmatized beliefs about cancer [10]. These barriers limit access to traditional recruitment methods that often rely on physicians to make referrals in healthcare settings.…”