Strategies to facilitate shared decision-making about pediatric oncology clinical trial enrollment: A systematic review

Patient Educ Couns. 2018 Jul;101(7):1157-1174. doi: 10.1016/j.pec.2018.02.001. Epub 2018 Feb 11.

Abstract

Objective: We conducted a systematic review to identify the strategies that have been recommended in the literature to facilitate shared decision-making regarding enrolment in pediatric oncology clinical trials.

Methods: We searched seven databases for peer-reviewed literature, published 1990-2017. Of 924 articles identified, 17 studies were eligible for the review. We assessed study quality using the 'Mixed-Methods Appraisal Tool'. We coded the results and discussions of papers line-by-line using nVivo software. We categorized strategies thematically.

Results: Five main themes emerged: 1) decision-making as a process, 2) individuality of the process; 3) information provision, 4) the role of communication, or 5) decision and psychosocial support. Families should have adequate time to make a decision. HCPs should elicit parents' and patients' preferences for level of information and decision involvement. Information should be clear and provided in multiple modalities. Articles also recommended providing training for healthcare professionals and access to psychosocial support for families.

Conclusion: High quality, individually-tailored information, open communication and psychosocial support appear vital in supporting decision-making regarding enrollment in clinical trials. These data will usefully inform future decision-making interventions/tools to support families making clinical trial decisions.

Practice implications: A solid evidence-base for effective strategies which facilitate shared decision-making is needed.

Keywords: Clinical trials; Commmunication; Decision making; Facilitators; Information; Pediatric oncology.

Publication types

  • Research Support, Non-U.S. Gov't
  • Systematic Review

MeSH terms

  • Child
  • Clinical Trials as Topic*
  • Communication*
  • Decision Making*
  • Humans
  • Infant
  • Medical Oncology*
  • Neoplasms / therapy
  • Parents*
  • Patient Selection*
  • Pediatrics*