Current status and implementation strategies of patient education in core outcome set development

Objective: Patient participation is essential for Core Outcome Set (COS) development studies. Patient education during participation may help patients better express their views in COS studies. This study aimed to investigate the current status of patient participation and the specified educational information in COS studies.Methods: We conducted a systematic review of COS development studies. Information on patient participation in COS research, and especially details of patient education, was analyzed.Results: In total, 146 COS development studies were included in this review. Of these, 125 studies (85.6%) mentioned patient participation. Most studies did not provide explicit information on patient participation. Some studies mentioned recruiting patients, but ultimately, none of them responded. Six studies reported conducting patient education through workshops, creating patient forums, or providing videos and slides. However, these studies did not provide details on education. Twenty-three studies used the plain language to explain patient outcomes.Conclusion: COS developers are increasingly focusing on patient participation. However, only a few COS studies have explicitly reported conducting measures related to patient education. Further patient education is necessary when they participate in the development of a new Core Outcome Set. Practice implication: This article provides implementation strategies related to patient education for future COS development studies.

Automated summary

This study investigated the current status of patient participation and education in Core Outcome Set (COS) studies. The findings showed that although COS developers are increasingly focusing on patient participation, only a few studies reported explicit measures related to patient education. Further patient education is necessary in the development of a new Core Outcome Set.