Maximizing Retention in Community‐based Clinical Trials

Davis, Linda Lindsey; Broome, Marion E.; Cox, Ruth P.

doi:10.1111/j.1547-5069.2002.00047.x

Cited by 106 publications

(148 citation statements)

References 49 publications

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“…Secondly, Facebook can assist with identifying participants who are at risk of loss to follow up given that those who were re-engaged were younger, unmarried, had a lower household income, less education, and were more likely to identify as non-Caucasian compared to ongoing participants. This is consistent with other studies where more vulnerable groups are more susceptible to lost to follow-up [20,21]. Of note, among those lost to follow-up, there were no differences between those who were found through Facebook and those that were not identified.…”

Section: Discussionsupporting

confidence: 81%

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Mitigation of Participant Loss to Follow-Up Using Facebook: All Our Families Longitudinal Pregnancy Cohort (Preprint)

Stephenson¹,

Hetherington²,

Dodd³

et al. 2018

Preprint

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Section: Discussionsupporting

confidence: 81%

“…However when considering the literature surrounding finding, contacting and re-engaging lost to followup participants our sample size is consistent with other studies [16,21]. An additional limitation is that only one social media platform was used to re-contact participants, and these efforts were limited to a three month period.…”

Section: Discussionsupporting

confidence: 52%

Mitigation of Participant Loss to Follow-Up Using Facebook: All Our Families Longitudinal Pregnancy Cohort (Preprint)

Stephenson¹,

Hetherington²,

Dodd³

et al. 2018

Preprint

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“…, in review of 21 community-based trials, identified 9 themes and noted that those studies with the highest retention rate appeared to use a combination of strategies [11]. Hunt and White (1998) chose to review four longitudinal studies to develop a list of general strategies to maximize retention [16].…”

Section: Discussionmentioning

confidence: 99%

“…We included studies that provided data on retention rates, described data from a primary study, and provided information regarding strategies used to retain participants. We searched PubMed (August 11, 2005) 11, 2005). The search strategies combined text words and controlled vocabulary words for concepts of 'attrition', 'retention', 'patient dropouts' and 'loss to follow-up'.…”

Section: Searching and Study Selectionmentioning

confidence: 99%

“…The strategy category of flexibility followed by incentives, benefits and persistence were rated as most effective by the study personnel. completed a review of trials between 1990 and 1999 identifying 21 studies that included a description of retention strategies and retention rates [6]. The authors provided a table listing the trials rank-ordered based on the retention rate (specifics not provided) and suggested that those studies with higher retention were those using a combination of strategies.…”

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confidence: 99%

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Systematic review identifies number of strategies important for retaining study participants

Robinson

Dennison

Wayman

et al. 2007

Journal of Clinical Epidemiology

207

248

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Objective-Loss to follow-up threatens internal and external validity yet little research has examined ways to limit participant attrition. We conducted a systematic review of studies with a primary focus on strategies to retain participants in health care research.Study Design-We completed searches of PubMed, CINAHL, CENTRAL, Cochrane Methodology Register, and EMBASE (August 2005). We also examined reference lists of eligible articles and relevant reviews. A data-driven thematic analysis of the retention strategies identified common themes.Results-We retrieved 3,068 citations, 21 studies were eligible for inclusion. We abstracted 368 strategies and from these identified 12 themes. The studies reported a median of 17 strategies across a median of six themes. The most commonly reported strategies were systematic methods of participant contact and scheduling. Studies with retention rates lower than the mean rate (86%) reported fewer strategies. There was no difference in the number of themes used.Conclusion-Available evidence suggests that investigators should consider using a number of retention strategies across several themes to maximize the retention of participants. Further research, including explicit evaluation of the effectiveness of different strategies, is needed. Keywords patient participation; patient dropouts; in-person follow-up; follow-up studies; cohort studies; systematic review Loss to follow-up of research participants threatens the internal and external validity of a study [1;2]. The study results may be biased by differential dropout between comparison groups or Corresponding Author: Karen A. Robinson, Internal Medicine and Health Sciences Informatics, Medicine, Johns Hopkins University, 1830 East Monument Street, Room 8069, Baltimore, MD 21287, 410-502-9216 (voice), 410-955-0825 (fax), krobin@jhmi.edu Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final citable form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. . They elicited perceived barriers to participant retention and 61 retention strategies from the project staff and investigators from these trials. The retention strategies were categorized into eight themes which study personnel then ranked based on perceived effectiveness. The strategy category of flexibility followed by incentives, benefits and persistence were rated as most effective by the study personnel. NIH Public AccessDavis et al (2002) completed a review of trials between 1990 and 1999 identifying 21 studies that included a description of retention strategies and retention rates [6]. The authors provided a table listing the trials rank-ordered based on the retention rate (specifics not pro...

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Pilot Trial Characteristics, Postpilot Design Modifications, and Feasibility of Full-Scale Trials

Ying,

Ehrhardt

2023

JAMA Netw Open

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ImportancePilot trials often lead to study design changes in subsequent full-scale trials. Yet, it remains unclear whether these modifications improve the feasibility of the larger trial.ObjectiveTo compare feasibility estimates between pilot and full-scale trials and identify pilot trial characteristics and modifications associated with equivalent or improved feasibility in the full-scale trial.Design, Setting, and ParticipantsThis cohort study used pilot trials published between January 2005 and December 2018 and their corresponding full-scale trials. PubMed was searched for trials on February 19, 2022.ExposuresPilot trial characteristics and postpilot trial design modifications.Main Outcomes and MeasuresThe outcome of interest was difference in 3 feasibility parameters: successful screening probability, enrollment rate, and retention probability. These metrics were defined as equivalent or improved if the full-scale trial’s estimate was within or exceeding 10% of the pilot trial’s estimate.ResultsA total of 249 pairs of pilot and full-scale trials were analyzed, with 43%, 77%, and 82% of full-scale trials having equivalent or improved successful screening probabilities, enrollment rates, and retention probabilities, respectively. When pilot trials used feasibility progression criteria (relative risk [RR], 1.94; 95% CI, 1.02-5.97) and maintained masking for participants (RR, 1.82; 95% CI, 1.04-4.33) or health care practitioners (RR, 1.81; 95% CI, 1.03-3.97) consistent with the full-scale trial, the likelihood of achieving equivalent or improved screening success in full-scale trials increased. Increasing study sites after the pilot was associated with higher likelihood of equivalent or improved enrollment rates (RR, 1.03; 95% CI, 1.01-1.08). Adding extra content to the intervention (RR, 0.82; 95% CI, 0.66-0.98), changing to active control (RR, 0.74; 95% CI, 0.48-0.99), administrating the control treatment more frequently (RR, 0.60; 95% CI, 0.29-0.93), different follow-up lengths (RR, 0.85; 95% CI, 0.73-0.97), and more follow-up visits (RR, 0.86; 95% CI, 0.75-0.98) were associated with lower likelihood of equivalent or improved retention probability in the full-scale trial.Conclusions and relevanceIn this cohort study of pilot and full-scale trial pairs, pilot trial characteristics and postpilot modifications had varying associations with full-scale trial’s feasibility. If full-scale trials planned for masking, it was desirable to use it in the pilot. Modifications increasing participant burden might decrease full-scale trial feasibility. Trialists and funders should consider both pilot trial data and proposed design changes when assessing full-scale trials.

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Maximizing Retention in Community‐based Clinical Trials

Cited by 106 publications

References 49 publications

Mitigation of Participant Loss to Follow-Up Using Facebook: All Our Families Longitudinal Pregnancy Cohort (Preprint)

Mitigation of Participant Loss to Follow-Up Using Facebook: All Our Families Longitudinal Pregnancy Cohort (Preprint)

Systematic review identifies number of strategies important for retaining study participants

Pilot Trial Characteristics, Postpilot Design Modifications, and Feasibility of Full-Scale Trials

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