An Environmental Scan of Biopsychosocial and Clinical Variables in Cohort Studies of Cancer Survivors

Abstract

Background: An inventory of cancer survivorship cohorts is necessary to identify important gaps in what is being studied among cancer survivors. Methods: We conducted an environmental scan of cancer survivor cohorts to determine the scope and scale of information collected on demographic, biopsychosocial, and selected clinical variables from cancer survivors. Cohorts were eligible for inclusion in the environmental scan if the study was conducted in the United States, reported in English, and consisted of data collected from cancer survivors postdiagnosis and followed for at least 1 year. Results: Out of the 131 cohorts identified, 62 were eligible. There were 23 cancer sites represented, and more than half of the studies included breast cancer survivors (n ¼ 34). The next most commonly included cancers were leukemia (n ¼ 22) and lymphoma (n ¼ 23). The majority (n ¼ 59) collected information on clinical characteristics and basic diagnostic information, patient demographic characteristics (n ¼ 57), patient-reported symptoms (n ¼ 44), lifestyle (n ¼ 45), and psychologic characteristics (n ¼ 42). Half collected biospecimens (n ¼ 35) and biomarkers (n ¼ 35); fewer collected CAM use (n ¼ 19) and social characteristics (n ¼ 27). Conclusions: Extensive data are available in cancer cohorts to study important questions relevant to cancer survivors. Cohorts should consider collecting information on social and environmental factors, as well as biospecimen collection and biomarker analyses, and should include survivors from cancer sites less likely to be studied. Impact: This information can assist researchers in understanding the types of information currently being gathered from cancer survivors for further analysis and identify areas where more research is needed.

Identifying and describing cancer survivors: Implications for cancer survivorship research and clinical care

“…In this analysis, all but 1 of the cancer survivor cross‐sectional surveys included questions about specific types of treatments received. Although our analysis did not include cohort studies focusing on cancer survivors, cancer survivor cross‐sectional surveys appear to be more inclusive of treatment information in comparison with findings from an environmental scan of cancer survivor epidemiology cohort studies 41 . Without a comprehensive assessment of the receipt and completion of different types of treatments, it is impossible to identify associated treatment‐related adverse effects (acute, late, and long‐term).…”

Promoting patient engagement in cancer genomics research programs: An environmental scan

“…An environmental scan was conducted ( Rowel et al, 2005 ; Krok-Schoen et al, 2019 ) of research programs engaging patients in cancer genomics research. For the purposes of this paper, research programs can include research networks comprised of multiple institutions as well as large, centralized genomics data collection initiatives.…”

“…Environmental scans can describe the context in which decisions and processes are currently and have historically been made. They are an adaptive approach to identifying and synthesizing large and diverse forms of information ( Rowel et al, 2005 ; Krok-Schoen et al, 2019 ). Additionally, they can inform strategic planning, decision making, and future areas of inquiry ( Wilburn et al, 2016 ).…”