title: Perceptions of Study Newsletters for Older Cancer Patients in Longitudinal Studies.
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.
authors.affiliation: Department of Medicine, University Health Network, 200 Elizabeth Street Room EN14-214, Toronto, ON, M5G 2C4, Canada.
authors.forename: Mustafa
authors.initials: M
authors.lastname: Mohamedali
authors.affiliation: Department of Medicine, University Health Network, 200 Elizabeth Street Room EN14-214, Toronto, ON, M5G 2C4, Canada.
authors.forename: Joanna
authors.initials: J
authors.lastname: Sandoval
authors.affiliation: Department of Medicine, University Health Network, 200 Elizabeth Street Room EN14-214, Toronto, ON, M5G 2C4, Canada.
authors.forename: Vikarnan
authors.initials: V
authors.lastname: Thiruvarooran
authors.affiliation: Department of Medicine, University Health Network, 200 Elizabeth Street Room EN14-214, Toronto, ON, M5G 2C4, Canada.
authors.forename: Holly
authors.initials: H
authors.lastname: Stacey
authors.affiliation: Department of Medicine, University Health Network, 200 Elizabeth Street Room EN14-214, Toronto, ON, M5G 2C4, Canada.|Institute of Medical Sciences, University of Toronto, Toronto, Canada.
authors.forename: Meagan
authors.initials: M
authors.lastname: O'Neill
authors.affiliation: Department of Medicine, University Health Network, 200 Elizabeth Street Room EN14-214, Toronto, ON, M5G 2C4, Canada.
authors.forename: Henriette
authors.initials: H
authors.lastname: Breunis
authors.affiliation: Department of Medicine, University Health Network, 200 Elizabeth Street Room EN14-214, Toronto, ON, M5G 2C4, Canada.
authors.forename: Narhari
authors.initials: N
authors.lastname: Timilshina
authors.affiliation: Department of Medicine, University Health Network, 200 Elizabeth Street Room EN14-214, Toronto, ON, M5G 2C4, Canada.
authors.forename: Sara
authors.initials: S
authors.lastname: Durbano
authors.affiliation: Department of Medicine, University Health Network, 200 Elizabeth Street Room EN14-214, Toronto, ON, M5G 2C4, Canada. shabbir.alibhai@uhn.ca.|Institute of Medical Sciences, University of Toronto, Toronto, Canada. shabbir.alibhai@uhn.ca.|Department of Medicine and Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, ON, Canada. shabbir.alibhai@uhn.ca.
authors.forename: Shabbir M H
authors.initials: SMH
authors.lastname: Alibhai
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D006801:Humans; D008297:Male; D008875:Middle Aged; D002986:Clinical Trials as Topic / Q000523:psychology; D006266:Health Education; D008137:Longitudinal Studies; D009369:Neoplasms / Q000628:therapy; D010358:Patient Participation / Q000523:psychology / Q000706:statistics & numerical data; D010506:Periodicals as Topic; D011795:Surveys and Questionnaires; D013664:Teaching Materials
keywords: Patient education; Prostate cancer; Study newsletter; Study participants