Recruitment and retention challenges and strategies in randomized controlled trials of psychosocial interventions for children with cancer and their parents: a collective case study

Anne van Driessche, Kim Beernaert, Luc Deliens, Marijke C Kars, Maureen E Lyon, Maru Barrera, Veronica Dussel, Pernille Bidstrup, Abby R Rosenberg, Terrah F Akard, Joachim Cohen, Aline De Vleminck

Research output: Contribution to journalArticlepeer-review

Abstract

In pediatric oncology there are few examples of successful recruitment and retention strategies in psychosocial care research. This study aims to summarize experiences, challenges, and strategies for conducting randomized controlled trials (RCTs) of psychosocial intervention studies among children with cancer and their parent(s). We conducted a collective case study. To identify the cases, Pubmed and two trial registries were searched for ongoing and finished RCTs of psychosocial intervention studies for children with cancer and their parents. Online semi-structured expert interviews discussing recruitment and retention challenges and strategies were performed with principal investigators and research staff members of the identified cases. Nine studies were identified. Investigators and staff from seven studies participated, highlighting challenges and strategies within three major themes: eligibility, enrollment and retention. Regarding eligibility, collaborating constructively with healthcare professionals and involving them before the start of the study were essential. Being flexible, training the research staff, enabling alignment with the participants' situation, and providing consistency in contact between the research staff member and the families were important strategies for optimizing enrollment and retention. All studies followed a stepped process in recruitment. Conclusion: Although recruitment and retention in some selected studies were successful, there is a paucity of evidence on experienced recruitment and retention challenges in pediatric psychosocial research and best practices on optimizing them. The strategies outlined in this study can help researchers optimize their protocol and trial-implementation, and contribute to better psychosocial care for children with cancer and their parents. Trial Registration: This study is not a clinical trial. What is Known: • Performing RCTs is challenging, particularly in pediatric psychosocial research when both the child and parent are targeted. Recruitment and retention are common concerns. In pediatric oncology, there are few examples of successful recruitment and retention strategies in psychosocial care research. What is New: • Key strategies to collaborate constructively with healthcare professionals were outlined. Being flexible, training the research staff, alignment with the participant's situations and providing consistency in contact between the research staff member and the families were considered as essential strategies.

Original languageEnglish
Pages (from-to)4683-4706
Number of pages24
JournalEuropean Journal of Pediatrics
Volume182
Issue number10
Early online date10 Aug 2023
DOIs
Publication statusPublished - Oct 2023

Bibliographical note

Funding Information:
This study was supported by The Research Foundation – Flanders (FWO) [under grant Agreement G.0194.18 N] and Kinderkankerfonds [no grant number].

Publisher Copyright:
© 2023, The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.

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