Journal of Cancer Education

, Volume 33, Issue 2, pp 463–469 | Cite as

Perceptions of Study Newsletters for Older Cancer Patients in Longitudinal Studies

  • Mustafa Mohamedali
  • Joanna Sandoval
  • Vikarnan Thiruvarooran
  • Holly Stacey
  • Meagan O’Neill
  • Henriette Breunis
  • Narhari Timilshina
  • Sara Durbano
  • Shabbir M.H. Alibhai
Article
  • 52 Downloads

Abstract

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.

Keywords

Patient education Prostate cancer Study participants Study newsletter 

Notes

Acknowledgments

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.

Authors’ Contributions

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

Ethical Approval

“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.

Supplementary material

13187_2016_1143_MOESM1_ESM.docx (201 kb)
Fig S1 (DOCX 200 kb)
13187_2016_1143_MOESM2_ESM.docx (12 kb)
Table S1 (DOCX 11 kb)

References

  1. 1.
    Mody L, Miller DK, McGloin JM, Freeman M, Marcantonio ER, Magaziner J, Studenski S (2008) Recruitment and retention of older adults in aging research. J Am Geriatr Soc 56(12):2340–2348CrossRefPubMedPubMedCentralGoogle Scholar
  2. 2.
    Taylor-Piliae RE, Boros D, Coull BM (2014) Strategies to improve recruitment and retention of older stroke survivors to a randomized clinical exercise trial. J Stroke Cerebrovasc Dis 23(3):462–468CrossRefPubMedGoogle Scholar
  3. 3.
    McSweeney JC, Pettey CM, Fischer EP, Spellman A (2009) Going the distance: overcoming challenges in recruitment and retention of black and white women in multisite, longitudinal study of predictors of coronary heart disease. Res Gerontol Nurs 2(4):256–264CrossRefPubMedGoogle Scholar
  4. 4.
    Blanton S, Morris DM, Prettyman MG, McCulloch K, Redmond S, Light KE, Wolf SL (2006) Lessons learned in participant recruitment and retention: the EXCITE trial. Phys Ther 86(11):1520–1533CrossRefPubMedGoogle Scholar
  5. 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
  6. 6.
    Bailey C, Buckley V (2011) Recruiting and retaining older persons within a home-based pilot study using movement sensors. Health & social care in the community 19(1):98–105CrossRefGoogle Scholar
  7. 7.
    Cassidy EL, Baird E, Sheikh JI (2001) Recruitment and retention of elderly patients in clinical trials: issues and strategies. Am J Geriatr Psychiatry 9(2):136–140CrossRefPubMedGoogle Scholar
  8. 8.
    Jancey J, Howat P, Lee A, Clarke A, Shilton T, Fisher J, Iredell H (2006) Effective recruitment and retention of older adults in physical activity research: PALS study. Am J Health Behav 30(6):626–635CrossRefPubMedGoogle Scholar
  9. 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. 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
  11. 11.
    Robinson KA, Dennison CR, Wayman DM, Pronovost PJ, Needham DM (2007) Systematic review identifies number of strategies important for retaining study participants. J Clin Epidemiol 60(8):757–7e1CrossRefPubMedPubMedCentralGoogle Scholar
  12. 12.
    McCarty CA, Garber A, Reeser JC, Fost NC (2011) Study newsletters, community and ethics advisory boards, and focus group discussions provide ongoing feedback for a large biobank. Am J Med Genet A 155(4):737–741CrossRefGoogle Scholar
  13. 13.
    Heuser L, Davis S (1991) The effect of an informational newsletter on control participation rates: a randomized study. Epidemiology 2(5):380–382CrossRefPubMedGoogle Scholar
  14. 14.
    Mitchell N, Hewitt CE, Lenaghan E, Platt E, Shepstone L, Torgerson DJ, SCOOP study team (2012) Prior notification of trial participants by newsletter increased response rates: a randomized controlled trial. J Clin Epidemiol 65(12):1348–1352CrossRefPubMedGoogle Scholar
  15. 15.
    University Health Network, Toronto (2014) A Phase II RCT of Strategies to Improve Bone Health in Men on ADT. In: ClinicalTrials.gov National Library of Medicine (US). Available from: https://ClinicalTrials.gov/show/NCT02043236 NLM Identifier: NCT02043236
  16. 16.
    Blackburn M, Harrison GW, Rutström EE (1994) Statistical bias functions and informative hypothetical surveys. Am J Agric Econ 76(5):1084–1088CrossRefGoogle Scholar
  17. 17.
    Public Health Agency of Canada (2010) Age-friendly communication. Public Health Agency of Canada, OttawaGoogle Scholar
  18. 18.
    Hussain S, Breunis H, Timilshina N, Alibhai SM (2012) Effective communication of study results to older participants with prostate cancer: results of a survey. Journal of Geriatric Oncology 3(3):205–211CrossRefGoogle Scholar
  19. 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

Copyright information

© American Association for Cancer Education 2016

Authors and Affiliations

  • Mustafa Mohamedali
    • 1
  • Joanna Sandoval
    • 1
  • Vikarnan Thiruvarooran
    • 1
  • Holly Stacey
    • 1
  • Meagan O’Neill
    • 1
    • 2
  • Henriette Breunis
    • 1
  • Narhari Timilshina
    • 1
  • Sara Durbano
    • 1
  • Shabbir M.H. Alibhai
    • 1
    • 2
    • 3
  1. 1.Department of MedicineUniversity Health NetworkTorontoCanada
  2. 2.Institute of Medical SciencesUniversity of TorontoTorontoCanada
  3. 3.Department of Medicine and Institute of Health Policy, Management, and EvaluationUniversity of TorontoTorontoCanada

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