Dataset Information

Recruiting and retaining community-based participants in a COVID-19 longitudinal cohort and social networks study: lessons from Victoria, Australia.

ABSTRACT:

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.

SUBMITTER: Nguyen T

PROVIDER: S-EPMC9969937 | biostudies-literature | 2023 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Recruiting and retaining community-based participants in a COVID-19 longitudinal cohort and social networks study: lessons from Victoria, Australia.

Nguyen Thi T Thomas Alexander J AJ Kerr Phoebe P Stewart Ashleigh C AC Wilkinson Anna Lee AL Nguyen Long L Altermatt Aimée A Young Kathryn K Heath Katherine K Bowring Anna A Fletcher-Lartey Stephanie S Lusher Dean D Hill Sophie S Pedrana Alisa A Stoové Mark M Gibney Katherine K Hellard Margaret M

BMC medical research methodology 20230227 1

<h4>Background</h4>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.<h4>Methods</h4>Optimise recruited adults residing in Victoria, Australia September 01 2020-September 30 2021. High-fre ...[more]

PMID: 36849927

Similar Datasets

Project description:BackgroundA Core Outcome Set (COS) is an agreed list of outcomes that are measured and reported in all clinical trials for a particular health condition. An 'e-Delphi' is an increasingly popular method for developing a COS whereby stakeholders are consulted via a multi-round online survey to reach agreement regarding the most important outcomes. Many COS studies seek diverse, international input that includes professionals and healthcare users. However, the recruitment and retention of participants can be deterred by various factors (e.g. language barriers and iterative, time-consuming rounds). This report evaluates the effectiveness of recruitment and retention methods used in the Core Outcome Measures in Tinnitus International Delphi (COMiT'ID) study using participant feedback from healthcare users, healthcare practitioners, researchers, commercial representatives and funders.MethodsA range of methods were applied to recruit participants to the study and maintain engagement over the three rounds. Feedback on recruitment and retention methods was collected using a twenty-item online questionnaire, with free text comments.ResultsA personalised email invitation was the most frequent recruitment route, and 719 professionals and healthcare users consented to take part. Retention of each stakeholder group ranged from 76 to 91% completing all three e-Delphi rounds. Feedback was given by 379 respondents. A majority of respondents were satisfied with the study methods that were implemented to promote retention. Over 55% indicated that their overall experience closely matched their expectations at the start of the study, and over 90% felt that their contribution was appreciated.ConclusionsThis report highlights study methods that worked well with respect to recruitment and retention, and those that did not. Findings provide a unique contribution to the growing evidence base of good practice in COS development by demonstrating the relative effectiveness of recruitment and retention methods for an e-Delphi survey.Trial registrationThis project was registered (November 2014) in the database of the Core Outcome Measures in Effectiveness Trials (COMET) initiative. The protocol is published in Trials (doi:10.1186/s13063-017-2123-0).

Project description:BackgroundEffective strategies for participant retention are critical in health research to ensure validity, generalizability and efficient use of resources. Yet standardized guidelines for planning and reporting on retention efforts have been lacking. As with randomized controlled trial (RCT) and systematic review (SR) protocols, retention protocols are an opportunity to improve transparency and rigor. An RCT being conducted in British Columbia (BC), Canada provides a case example for developing a priori retention frameworks for use in protocol planning and reporting.MethodsThe BC Healthy Connections Project RCT is examining the effectiveness of a nurse home-visiting program in improving child and maternal outcomes compared with existing services. Participants (N = 739) were girls and young women preparing to parent for the first time and experiencing socioeconomic disadvantage. Quantitative data were collected upon trial entry during pregnancy and during five follow-up interviews until participants' children reached age 2 years. A framework was developed to guide retention of this study population throughout the RCT. We reviewed relevant literature and mapped essential retention activities across the study planning, recruitment and maintenance phases. Interview completion rates were tracked.ResultsResults from 3302 follow-up interviews (in-person/telephone) conducted over 4 years indicate high completion rates: 90% (n = 667) at 34 weeks gestation; and 91% (n = 676), 85% (n = 626), 80% (n = 594) and 83% (n = 613) at 2, 10, 18 and 24 months postpartum, respectively. Almost all participants (99%, n = 732) provided ongoing consent to access administrative health data. These results provide preliminary data on the success of the framework.ConclusionsOur retention results are encouraging given that participants were experiencing considerable socioeconomic disadvantage. Standardized retention planning and reporting may therefore be feasible for health research in general, using the framework we have developed. Use of standardized retention protocols should be encouraged in research to promote consistency across diverse studies, as now happens with RCT and SR protocols. Beyond this, successful retention approaches may help inform health policy-makers and practitioners who also need to better reach, engage and retain underserved populations.Trial registrationClinicalTrials.gov, NCT01672060. Registered on 24 August 2012.

Project description:IntroductionMental health services are fragmented in Australia leading to a priority being placed on whole-of-community approaches and integration. We describe the LifeSpan suicide prevention intervention developed by the Black Dog Institute that draws upon nine evidence-based community-wide strategies. We examined the suicide prevention Collaborative group at each site. We evaluated how the social capital of the community and service providers changed, and how the brokerage roles of the Collaborative affected integration of effort.MethodsThis was a two phase, explanatory mixed methods study. Participants were LifeSpan Coordinators, The Collaborative and working group members at four LifeSpan sites in New South Wales (three metropolitan/regional, one regional/rural). Quantitative social network data was collected through an online survey and analysed using Gephi software. Qualitative data through focus groups and interviews with Lifespan Coordinators and community stakeholders.ResultsThe social network survey was administered in three sites and was completed by 83 people. Data gave quantitative evidence of increased engagement across key stakeholders in each region who had not previously been working together. Nominations of other collaborators showed this network extended beyond the formal structures of The Collaborative. LifeSpan Coordinators were empirically identified as key players in the networks. Qualitative data was collected from 53 individuals (18 interviews and five focus groups) from across all sites. Participants identified benefits of this collaborative approach including greater capacity to run activities, better communication between groups, identification of "who's who" locally, improvement in the integration of priorities, services and activities, and personal support for previously isolated members. LifeSpan Coordinators were key to the smooth running of The Collaborative. This may represent a risk to sustainability if they left. The collaboration model that suited metropolitan sites was difficult to sustain in rural sites, but gains were seen in better coordinated postvention efforts.ConclusionLifeSpan Coordinators were noted to be exceptional people who magnified the benefits of collaboration. Geographic proximity was a potent driver of social capital. Initial engagement with local stakeholders was seen as essential but time-consuming work in the implementation phase. Coordinators reported this important work was not always acknowledged as part of their formal role.

Dataset Information

Recruiting and retaining community-based participants in a COVID-19 longitudinal cohort and social networks study: lessons from Victoria, Australia.

Background

Methods

Results

Conclusion

Publications

Recruiting and retaining community-based participants in a COVID-19 longitudinal cohort and social networks study: lessons from Victoria, Australia.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets