Patient-Reported Outcome Measures in Fetal Medicine: A Pilot Feasibility Study

Objective: A core set of generic Patient Reported Outcome Measures (PROMs) was recently developed to collect information from patients about their health status and quality of life. This study aims to: (1) identify relevant Patient Reported Outcome Measures (PROMs) from this core set for parents facing a fetal anomaly diagnosis and determine their optimal use and (2) assess the usability and feasibility of the adapted setting-specific PROMs in a Dutch Fetal Medicine Department. Method: A diverse expert panel of parents and healthcare professionals selected relevant PROMs along with their optimal timing and application. In a subsequent pilot feasibility study, parents completed the PROMs and discussed results with professionals. Responses were converted to T-scores using the PROMIS short forms. Usability and feasibility were assessed via questionnaires. Results: Twenty-eight participants (19 parents, 9 professionals) agreed on two key PROMs: “ability to participate in social roles” and ‘emotional distress (anxiety and depression)’. In the pilot study (n = 32; 21 parents, 11 professionals), PROMs were completed in 5.9 min on average, with participants opting to complete PROMs digitally from home. Parents found PROMs useful for enhancing communication with their partners and healthcare providers. The study identified the need for case managers, training on interpreting PROM results, a user-friendly Information Technology (IT) platform, and customized PROMs. Conclusion: This study shows potential benefits of PROMs in Fetal Medicine but encountered challenges regarding complexity, professional engagement, and time constraints in practice.