Securing direct stakeholder feedback to inform clinical research in serious mental illness: Results of a patient and family perspectives survey

Abstract

Mental illness research routinely includes unfamiliar or potentially frightening procedures like lumbar puncture (LP), contributing to low enrollment and retention. Previous studies related to LP acceptance have focused on older individuals, and little information on participant preferences for educational materials is available. We developed an online survey assessing existing knowledge, comfort and concerns, and preferences for educational materials in the context of our clinical study on schizophrenia spectrum conditions (SSCs). We found that participants were generally knowledgeable and interested in engaging with clinical SSC research. Frequency of engagement with research publications differed significantly by participant groups and age. Comfort levels were consistently highest for study procedures other than LP, though surprisingly the average number of informational needs per procedure was not significantly different for LP compared to other procedures. Preferences for format and source of educational materials varied across participant groups and age. Our results suggest that younger individuals with an SSC diagnosis are likely to have limited exposure to information, and proactively providing accessible and accurate educational materials may improve positive perceptions of LP. Providing content in a range of formats and sources will ensure that participants and their support networks have access to their preferred resources.