Perceptions of Study Newsletters for Older Cancer Patients in Longitudinal Studies
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To date, no study has examined the value of providing study newsletters in educating and motivating participants taking part in longitudinal intervention studies and reducing attrition in studies. The study team examined perceptions and satisfaction towards study newsletters, and their potential benefits, in a population of older men with prostate cancer participating in two ongoing longitudinal trials. Two study newsletters issues were mailed out 4 months apart to prostate cancer patients participating in a bone health and/or exercise intervention trial. Participants (n = 133) were invited to complete an 18-item custom-designed survey examining perceptions towards and satisfaction with the newsletter, and provide feedback about what makes an ideal study newsletter. Analyses were primarily descriptive. Resources required to produce a study newsletter were also calculated. Of 133 participants, 83 usable surveys were returned (response rate 62.4%). The mean satisfaction rating for the newsletter was 8.5/10 (SD 1.9) (10 = highly satisfied). Seventy eight percent said the newsletter encouraged them to continue to participate in the study, and 93% indicated that providing such study newsletters should be optional (64%) or mandatory (29%). Each newsletter required 31 h of study personnel time (mostly research student) to produce. Study participants were very satisfied with the newsletter and the majority indicated that study newsletters should be a regular practice in all long-term studies and may improve participant retention. Producing a newsletter is a low-cost method of educating participants in longitudinal studies. Its impact on recruitment and retention should be examined in clinical trials.
KeywordsPatient education Prostate cancer Study participants Study newsletter
The authors would like to thank the study participants for their enthusiastic support. We would also like to thank the Canadian Cancer Society, the Canadian Institutes for Health Research, and Prostate Cancer Canada for providing funding for this study, as well as the larger studies.
Concept and design: Mustafa Mohamedali, Vikarnan Thiruvarooran, Meagan O’Neill, Henriette Breunis, Sara Durbano, Shabbir M.H. Alibhai
Data collection: Joanna Sandoval, Vikarnan Thiruvarooran, Holly Stacey, Meagan O’Neill, Henriette Breunis, Mustafa Mohamedali, Shabbir M.H. Alibhai
Analysis and interpretation of data: Mustafa Mohamedali, Narhari Timilshina, Joanna Sandoval, Shabbir M.H. Alibhai
Manuscript writing: Mustafa Mohamedali, Joanna Sandoval, Vikarnan Thiruvarooran, Holly Stacey, Meagan O’Neill, Henriette Breunis, Narhari Timilshina, Sara Durbano, Shabbir M.H. Alibhai
Manuscript approval: Mustafa Mohamedali, Joanna Sandoval, Vikarnan Thiruvarooran, Holly Stacey, Meagan O’Neill, Henriette Breunis, Narhari Timilshina, Sara Durbano, Shabbir M.H. Alibhai
Compliance with Ethical Standards
“All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.” The larger studies, the newsletters, and the survey were all approved by the institutional research ethics board prior to study commencement.
Conflict of Interest
The authors declare that they have no conflict of interest.
- 5.Mullen, S. P., Wójcicki, T. R., Mailey, E. L., Szabo, A. N., Gothe, N. P., Olson, E. A., ... & McAuley, E. 2013. A profile for predicting attrition from exercise in older adults. Prevention science, 14(5), 489–496.Google Scholar
- 9.Mills, E. J., Seely, D., Rachlis, B., Griffith, L., Wu, P., Wilson, K., ... & Wright, J. R. 2006. Barriers to participation in clinical trials of cancer: a meta-analysis and systematic review of patient-reported factors. The lancet oncology, 7(2), 141–148.Google Scholar
- 10.Wright, J. R., Whelan, T. J., Schiff, S., Dubois, S., Crooks, D., Haines, P. T., ... & Levine, M. N. 2004. Why cancer patients enter randomized clinical trials: exploring the factors that influence their decision. Journal of Clinical Oncology,22(21), 4312–4318.Google Scholar
- 17.Public Health Agency of Canada (2010) Age-friendly communication. Public Health Agency of Canada, OttawaGoogle Scholar
- 19.Alibhai, S. M., Santa Mina, D., Ritvo, P., Sabiston, C., Krahn, M., Tomlinson, G., ... & Culos-Reed, N. 2015. A phase II RCT and economic analysis of three exercise delivery methods in men with prostate cancer on androgen deprivation therapy. BMC cancer, 15(1), 312.Google Scholar