Recruiting children and young people with vision impairment for clinical research - experience from the SeeMyLife study

Abstract

Effective participant recruitment is crucial for the success of clinical trials, yet little is known about facilitators and barriers to recruitment in pediatric populations with visual impairment. Understanding which methods yield the highest participant engagement can help optimize recruitment efforts and improve study outcomes. Thus, we assessed factors associated with recruitment in the SeeMyLife study, a European multi-center cohort study about quality of life and participation of children and young people with visual impairment. Data on the perceived effectiveness of recruitment strategies were collected from principal investigators, study coordinators, clinical and research staff using an online survey. Additional information on recruitment approaches was obtained through document analysis of study-related communications, including e-mails and meeting minutes. Descriptive statistics were used to summarize recruitment rates and perceived effectiveness scores. Open-ended responses regarding recruitment challenges were analyzed thematically to identify common barriers and facilitators. Seventeen clinical and research staff members from six countries participated in the survey and shared their insights and experience with participant recruitment. In total, study staff reported using twelve distinct recruitment sources to enhance participant enrolment. These sources were grouped into three broad categories: healthcare settings, community engagement and educational settings, and professional and system-level approaches. The recruitment of participants using the hospital information system was perceived as the most effective recruitment strategy, used by 71% of respondents. Other highly ranked sources included pediatric visual rehabilitation centers, patient associations, and affiliated university ophthalmology departments, where staff actively presented the study to their patients and referred eligible participants. Commonly reported recruitment challenges included restrictive inclusion criteria, limited parental responsiveness, concerns about the impact of study participation on children's well-being, and institutional barriers. Successful strategies for enrolling children and young people with visual impairment into clinical research include direct interactions between clinical staff and families, likely due to established trust, easier identification of eligible participants, and clearer communication about the study. In contrast, recruitment approaches outside clinical care settings were perceived as less effective. These findings highlight the importance of integrating recruitment efforts within established healthcare networks when conducting pediatric vision impairment research.