Translating scores into meaning: a co-produced forum for patient-reported outcome measure interpretation in pediatric congenital heart disease

Abstract Background Patient and public involvement (PPI) and co-production are intended to increase the relevance and uptake of health research, yet structured ways of jointly interpreting patient-reported outcome measure (PROM) data in real time remain limited. We developed and tested a PROM-anchored participatory forum within a longitudinal pediatric congenital heart disease (CHD) study. Methods The forum was co-developed and co-delivered by a patient organization and a university hospital as an explicit integrated knowledge translation (iKT) episode. Interim Pediatric Quality of Life Inventory™ Cardiac Module (PedsQL CM) results were presented in a plain-language life-course graphic and discussed in two rounds entailing small-group reflection and prioritization. Data sources included facilitator notes, plenary clusters, poll outputs, post-forum evaluation responses, and baseline PROM patterns. We took a framework-guided thematic approach and adapted joint displays to integrate qualitative and quantitative data. Results Twenty families participated. The format enabled participants to contextualize aggregated PROM findings in relation to everyday life, and to identify where quantitative patterns resonated with lived experience and where additional nuance was needed. The forum produced co-produced interpretation memos, a prioritized action list, an implementation and adaptation package pack, and the family-facing dissemination figure called the “Quality-of-Life Tree”. Participants highlighted transition-sensitive concerns, emotional burden, care coordination, and the need for child-friendly explanations and identifiable points of contact. The process was perceived as comprehensible and useful. Conclusions A PROM-anchored participatory forum can make interim outcome data usable before the end of data collection and translate them into shared interpretation, action planning, and family-friendly dissemination. The approach offers a transferable model for linking PROM measurement, participatory interpretation, and follow-up in pediatric care research. Trial registration German Clinical Trials Register (DRKS), DRKS00028565. Registered on March 30, 2023.