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

Abstract

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. 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. 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. 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. German Clinical Trials Register (DRKS), DRKS00028565. Registered on March 30, 2023. Patient and family involvement is increasingly important in health research, but it is not always clear how families can be involved in making sense of questionnaire results. In this study, we created a forum where families of children with congenital heart disease, healthcare professionals, and a patient organization discussed early results from a health-related quality-of-life questionnaire for children and adolescents with congenital heart disease. We presented the results in a visual format and asked participants to talk about what the findings meant to them in everyday life. The forum helped families explain where the results matched their experiences and where more context was needed. It also helped the group agree on the next steps, such as clearer information for families, better communication with hospitals and community services, and more support around transition points in family life. The forum produced several practical outputs: short interpretation notes, a list of priorities, a package for others who may want to take the same approach, and a family-friendly summary figure called the “Quality-of-Life Tree”. Participants found the forum understandable and useful. Our findings suggest that questionnaire results can help turn data into action and make research more useful for families and care teams. Furthermore, forum-based formats appear to provide a solid foundation for the collaborative interpretation of data from patient-reported outcome measures.