TY - JOUR
T1 - A qualitative study examining newly diagnosed breast cancer patients’ experiences of participating in the Alberta Moving Beyond Breast Cancer (AMBER) prospective cohort study
AU - Corcoran, Lynn
AU - Friedenreich, Christine M.
AU - McNeely, Margaret L.
AU - Culos-Reed, Nicole S.
AU - Bell, Gordon
AU - Dickau, Leanne
AU - Courneya, Kerry S.
AU - Vallance, Jeff K.
N1 - Funding Information:
This study was funded by a Team Grant (#107534), a Project Grant (#155952), and a Foundation Grant (grant #159927) from the Canadian Institutes of Health Research. JV and KSC are supported by the Canada Research Chairs Program. CMF was supported by an Alberta Innovates Health Senior Scholar Award and by the Alberta Cancer Foundation Weekend to End Women’s Cancers Breast Cancer Chair.
Funding Information:
The authors acknowledge and thank all participants for contributing their perspectives. The authors would also like to acknowledge and thank the Edmonton AMBER Study coordinator, Ms. Diane Cook, for her years of dedication, care, and commitment to the thousands of cancer survivors that have participated in exercise studies at the Behavioral Medicine Laboratory at the University of Alberta.
Publisher Copyright:
© 2023, The Author(s).
PY - 2023/12
Y1 - 2023/12
N2 - Background: Decisions to participate in cancer trials are associated with uncertainty, distress, wanting to help find a cure, the hope for benefit, and altruism. There is a gap in the literature regarding research examining participation in prospective cohort studies. The aim of this study was to examine the experiences of newly diagnosed women with breast cancer participating in the AMBER Study to identify potential strategies to support patients’ recruitment, retention, and motivation. Methods: Newly diagnosed breast cancer patients were recruited from the Alberta Moving Beyond Breast Cancer (AMBER) cohort study. Data were collected using semi-structured conversational interviews with 21 participants from February to May 2020. Transcripts were imported into NVivo software for management, organization, and coding. Inductive content analysis was undertaken. Results: Five main concepts associated with recruitment, retention, and motivation to participate were identified. These main concepts included: (1) personal interest in exercise and nutrition; (2) investment in individual results; (3) personal and professional interest in research; (4) burden of assessments; (5) importance of research staff. Conclusions: Breast cancer survivors participating in this prospective cohort study had numerous reasons for participating and these reasons could be considered in future studies to enhance participant recruitment and retention. Improving recruitment and retention in prospective cancer cohort studies could result in more valid and generalizable study findings that could improve the care of cancer survivors.
AB - Background: Decisions to participate in cancer trials are associated with uncertainty, distress, wanting to help find a cure, the hope for benefit, and altruism. There is a gap in the literature regarding research examining participation in prospective cohort studies. The aim of this study was to examine the experiences of newly diagnosed women with breast cancer participating in the AMBER Study to identify potential strategies to support patients’ recruitment, retention, and motivation. Methods: Newly diagnosed breast cancer patients were recruited from the Alberta Moving Beyond Breast Cancer (AMBER) cohort study. Data were collected using semi-structured conversational interviews with 21 participants from February to May 2020. Transcripts were imported into NVivo software for management, organization, and coding. Inductive content analysis was undertaken. Results: Five main concepts associated with recruitment, retention, and motivation to participate were identified. These main concepts included: (1) personal interest in exercise and nutrition; (2) investment in individual results; (3) personal and professional interest in research; (4) burden of assessments; (5) importance of research staff. Conclusions: Breast cancer survivors participating in this prospective cohort study had numerous reasons for participating and these reasons could be considered in future studies to enhance participant recruitment and retention. Improving recruitment and retention in prospective cancer cohort studies could result in more valid and generalizable study findings that could improve the care of cancer survivors.
KW - Breast cancer
KW - Physical activity
KW - Prospective cohort
KW - Qualitative
KW - Recruitment
UR - http://www.scopus.com/inward/record.url?scp=85160880529&partnerID=8YFLogxK
U2 - 10.1186/s12885-023-10967-3
DO - 10.1186/s12885-023-10967-3
M3 - Journal Article
C2 - 37268901
AN - SCOPUS:85160880529
VL - 23
JO - BMC Cancer
JF - BMC Cancer
IS - 1
M1 - 500
ER -