Journal Article

Retaining participants in community-based health research: a case example on standardized planning and reporting

Catherine, Nicole L. A., MacMillan, Harriet, Gonzalez, Andrea, Tallon, Corinne, Waddell, Charlotte, Marcellus, Lenora, Sheehan, Debbie, Jack, Susan M., Lever, Rosemary

2020

Overview

Background Effective 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. Methods The 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. Results Results 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. Conclusions Our 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 registration ClinicalTrials.gov , NCT01672060 . Registered on 24 August 2012.

• Publisher: BioMed Central,BioMed Central Ltd,Springer Nature B.V,BMC
• Subject: Adolescent / Adolescents / Attrition / Biomedicine / British Columbia - epidemiology / Child, Preschool / Children & youth / Clinical trials / Data collection / Female / Follow-Up Studies / Health care / Health disparities / Health Sciences / House Calls - statistics & numerical data / House Calls - trends / Humans / Intervention / Interviews / Interviews as Topic - methods / Interviews as Topic - statistics & numerical data / Literature reviews / Low income groups / Medical research / Medical research volunteers / Medicine / Medicine & Public Health / Methods / Models, Theoretical / Nurses / Nurses, Community Health - organization & administration / Nurses, Community Health - statistics & numerical data / Parenting - psychology / Patient Selection - ethics / Postpartum Period / Pregnancy / Public health / Randomized controlled trial / Randomized Controlled Trials as Topic / Recruiting / Research Design / Research methodology / Retention / Social Class / Socioeconomic disadvantage / Statistics for Life Sciences / Teenage pregnancy / Teenagers / Time / Vulnerable Populations - statistics & numerical data / Young Adult / Young women / Youth