Participant retention

This section contains the following: 


Introduction 

After the subjects are recruited into the trial, strategies aimed to conduct an adequate follow-up must be considered. This is a critical point, especially in long-term studies, or in trials where the outcome(s) of interest take some time to develop after recruitment. Primary and secondary endpoints must be systematically recorded, as well as any adverse event. Follow-up also includes a monitoring of compliance, protocol deviations, contamination, and co-interventions if appropriate, according to the trial design and objectives, as well as a documentation of losses and dropouts. This information in a randomized controlled trial is important, as the interpretation of the trial results must consider treatment acceptability and the level of non-adherence to therapy. Furthermore, in pragmatic trials the level of compliance must be seen as one aspect of the assessment of treatment, as it reflects behavior in clinical practice outside the trial setting.

Whatever the purpose of the trial, data collection is only possible if the staff remain actively involved throughout the duration of the trial and if the subjects are willing to maintain their participation in the study.

In order to ensure continuing commitment to a trial investigators must develop retention strategies such as newsletters, posters and merchandise.  These will often have resource implications and should be budgeted for.

Many recommendations exist for managing follow-up.  However, many have not been formally evaluated.  Researchers should balance the potential benefits of each component of the plan with the main objectives of the trial on one hand, with the resources and logistics required for its execution, on the other.



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Things to consider to keep participant interest


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Illustrative example - Scottish Bell's Palsy Study (video)


In a double-blind, placebo-controlled, randomized, factorial trial involving patients with Bell's palsy who were recruited within 72 hours after the onset of symptoms. Patients were randomly assigned to receive 10 days of treatment with prednisolone, acyclovir, both agents, or placebo. Follow up was at 3 and 9 months.  Keeping patient's interested in the study was of prime importance. Of 551 patient's who were randomised, 496 were assessed at both time points.  Dr Fergus Daly, University of Dundee, UK, and the study coordinator, describes how patient interest was maintained (MP4, 21 seconds).  Can't see video controller?   Play it in your media player.



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Further reading

Duley L & Farrell B.  Clinical Trials. London, BMJ Books, 2002.

Meinert CL & Tonascia S.  Clinical Trials. Design, Conduct, and Analysis. Oxford, Oxford University Press, 1986.

Friedman LM, Furberg CD, DeMets DL. Fundamentals of Clinical Trials. 3rd edition New York, Springer-Verlag, 1998

Shapiro SH, Louis TA.  Clinical Trials, Issues and Approaches. New York, Marcel Dekker, Inc., 1983.


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This page was last updated September 2008.