TY - JOUR
T1 - Recruiting and retaining community-based participants in a COVID-19 longitudinal cohort and social networks study
T2 - lessons from Victoria, Australia
AU - Nguyen, Thi
AU - Thomas, Alexander J.
AU - Kerr, Phoebe
AU - Stewart, Ashleigh C.
AU - Wilkinson, Anna Lee
AU - Nguyen, Long
AU - Altermatt, Aimée
AU - Young, Kathryn
AU - Heath, Katherine
AU - Bowring, Anna
AU - Fletcher-Lartey, Stephanie
AU - Lusher, Dean
AU - Hill, Sophie
AU - Pedrana, Alisa
AU - Stoové, Mark
AU - Gibney, Katherine
AU - Hellard, Margaret
N1 - Funding Information:
Optimise is a partnership between the Burnet Institute and Peter Doherty Institute in collaboration with The University of Melbourne, Swinburne University, La Trobe University, Monash University, Victorian Department of Health and Human Services, Centre for Culture Ethnicity and Health, Health Issues Centre, and Royal Children’s Hospital, Independent Multicultural Consultant. The authors gratefully acknowledge the generosity of the community members who participated in the study. The authors appreciatively acknowledge the work of all Optimise project team members and collaborators who have contributed to the ongoing delivery of the study. The data presented in this study may be requested by contacting the Optimise Study (https://optimisecovid.com.au/contact-us/) or the corresponding author. The Optimise Study Chief Investigators, through existing governance processes that include the completion of a data request form, will consider all requests for data on merit. Because some data collected data are of a sensitive nature, the data are not made publicly available. Optimise received funding support from the Victorian Government Department of Jobs, Precincts and Regions, the Victorian Department of Health, the Macquarie Group Foundation, and Burnet Institute donors. The authors gratefully acknowledge the contribution to this work of the Victorian Operational Infrastructure Support Program received by the Burnet Institute. MH receives funding support from a National Health and Medical Research Council Investigator grant.
Funding Information:
Our study demonstrates, during a global pandemic, there was a high willingness to engage in a longitudinal study for COVID-19. While retention was associated with age, gender, location, and education, comprehensive follow-up strategies, transparency with study findings and the unique data collection system likely contributed to low overall study attrition. The data collected and findings drawn from the study have been used to directly inform the Victorian government response on COVID-19 policy and practice. Acknowledgements Data access Grants and financial support
Publisher Copyright:
© 2023, The Author(s).
PY - 2023/12
Y1 - 2023/12
N2 - Background: Longitudinal studies are critical to informing evolving responses to COVID-19 but can be hampered by attrition bias, which undermines their reliability for guiding policy and practice. We describe recruitment and retention in the Optimise Study, a longitudinal cohort and social networks study that aimed to inform public health and policy responses to COVID-19. Methods: Optimise recruited adults residing in Victoria, Australia September 01 2020–September 30 2021. High-frequency follow-up data collection included nominating social networks for study participation and completing a follow-up survey and four follow-up diaries each month, plus additional surveys if they tested positive for COVID-19 or were a close contact. This study compared number recruited to a-priori targets as of September 302,021, retention as of December 31 2021, comparing participants retained and not retained, and follow-up survey and diary completion October 2020–December 2021. Retained participants completed a follow-up survey or diary in each of the final three-months of their follow-up time. Attrition was defined by the number of participants not retained, divided by the number who completed a baseline survey by September 302,021. Survey completion was calculated as the proportion of follow-up surveys or diaries sent to participants that were completed between October 2020–December 2021. Results: At September 302,021, 663 participants were recruited and at December 312,021, 563 were retained giving an overall attrition of 15% (n = 100/663). Among the 563 retained, survey completion was 90% (n = 19,354/21,524) for follow-up diaries and 89% (n = 4936/5560) for monthly follow-up surveys. Compared to participants not retained, those retained were older (t-test, p < 0.001), and more likely to be female (χ2, p = 0.001), and tertiary educated (χ2, p = 0.018). Conclusion: High levels of study retention and survey completion demonstrate a willingness to participate in a complex, longitudinal cohort study with high participant burden during a global pandemic. We believe comprehensive follow-up strategies, frequent dissemination of study findings to participants, and unique data collection systems have contributed to high levels of study retention.
AB - Background: Longitudinal studies are critical to informing evolving responses to COVID-19 but can be hampered by attrition bias, which undermines their reliability for guiding policy and practice. We describe recruitment and retention in the Optimise Study, a longitudinal cohort and social networks study that aimed to inform public health and policy responses to COVID-19. Methods: Optimise recruited adults residing in Victoria, Australia September 01 2020–September 30 2021. High-frequency follow-up data collection included nominating social networks for study participation and completing a follow-up survey and four follow-up diaries each month, plus additional surveys if they tested positive for COVID-19 or were a close contact. This study compared number recruited to a-priori targets as of September 302,021, retention as of December 31 2021, comparing participants retained and not retained, and follow-up survey and diary completion October 2020–December 2021. Retained participants completed a follow-up survey or diary in each of the final three-months of their follow-up time. Attrition was defined by the number of participants not retained, divided by the number who completed a baseline survey by September 302,021. Survey completion was calculated as the proportion of follow-up surveys or diaries sent to participants that were completed between October 2020–December 2021. Results: At September 302,021, 663 participants were recruited and at December 312,021, 563 were retained giving an overall attrition of 15% (n = 100/663). Among the 563 retained, survey completion was 90% (n = 19,354/21,524) for follow-up diaries and 89% (n = 4936/5560) for monthly follow-up surveys. Compared to participants not retained, those retained were older (t-test, p < 0.001), and more likely to be female (χ2, p = 0.001), and tertiary educated (χ2, p = 0.018). Conclusion: High levels of study retention and survey completion demonstrate a willingness to participate in a complex, longitudinal cohort study with high participant burden during a global pandemic. We believe comprehensive follow-up strategies, frequent dissemination of study findings to participants, and unique data collection systems have contributed to high levels of study retention.
KW - Attrition bias
KW - Covid-19
KW - Longitudinal cohort study
UR - http://www.scopus.com/inward/record.url?scp=85148973164&partnerID=8YFLogxK
U2 - 10.1186/s12874-023-01874-z
DO - 10.1186/s12874-023-01874-z
M3 - Article
C2 - 36849927
AN - SCOPUS:85148973164
SN - 1471-2288
VL - 23
JO - BMC Medical Research Methodology
JF - BMC Medical Research Methodology
IS - 1
M1 - 54
ER -
