Participant retention practices in longitudinal clinical research studies with high retention rates

Martha Abshire,Michelle N Eakin,Maan Isabella A Cajita,Cheryl Dennison Himmelfarb,Dale M Needham,Victor D Dinglas

doi:10.1186/s12874-017-0310-z

Martha Abshire, Michelle N Eakin + Show 4 more

Open Access

https://doi.org/10.1186/s12874-017-0310-z

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Abstract

BackgroundThere is a need for improving cohort retention in longitudinal studies. Our objective was to identify cohort retention strategies and implementation approaches used in studies with high retention rates.MethodsLongitudinal studies with ≥200 participants, ≥80% retention rates over ≥1 year of follow-up were queried from an Institutional Review Board database at a large research-intensive U.S. university; additional studies were identified through networking. Nineteen (86%) of 22 eligible studies agreed to participate. Through in-depth semi-structured interviews, participants provided retention strategies based on themes identified from previous literature reviews. Synthesis of data was completed by a multidisciplinary team.ResultsThe most commonly used retention strategies were: study reminders, study visit characteristics, emphasizing study benefits, and contact/scheduling strategies. The research teams were well-functioning, organized, and persistent. Additionally, teams tailored their strategies to their participants, often adapting and innovating their approaches.ConclusionsThese studies included specialized and persistent teams and utilized tailored strategies specific to their cohort and individual participants. Studies’ written protocols and published manuscripts often did not reflect the varied strategies employed and adapted through the duration of study. Appropriate retention strategy use requires cultural sensitivity and more research is needed to identify how strategy use varies globally.

Highlights

There is a need for improving cohort retention in longitudinal studies
The objective of this study was to identify, via survey and in-depth, semi-structured interviews, cohort retention strategies and implementation approaches used in longitudinal clinical research studies that achieved high
Included studies had diverse patient populations, including victims of intimate partner violence, persons living with human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS), survivors of critical illness and other serious illnesses

Summary

Introduction

There is a need for improving cohort retention in longitudinal studies. Our objective was to identify cohort retention strategies and implementation approaches used in studies with high retention rates. Retention of study participants is vital to ensure the power and internal validity of longitudinal research [1,2,3]. The following retention strategy themes were identified in two systematic reviews: (1) contact and scheduling methods, (2) visit characteristics, (3) study personnel, (4) nonfinancial. The objective of this study was to identify, via survey and in-depth, semi-structured interviews, cohort retention strategies and implementation approaches used in longitudinal clinical research studies that achieved high. We intentionally focused the research question on studies that had success with high retention rates, with the goal of learning from their experience and establishing a template and tools for successful retention practices. Findings from this study augment existing information on retention strategies from previous research and systematic reviews [3,4,5,6,7,8,9], and inform researchers designing studies and cohort retention tools

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