Patient-Reported Outcome Measures in Fetal Medicine: A Pilot Feasibility Study
N M T H Crombag1, B Teeuwen1, E M P Akkerman1
1Department of Obstetrics and Gynaecology, Wilhelmina Children's Hospital Utrecht, Utrecht University, Utrecht, the Netherlands.
Prenatal Diagnosis
|November 4, 2025
Summary
Patient Reported Outcome Measures (PROMs) can aid communication for parents facing fetal anomaly diagnoses. However, implementation requires addressing complexity, professional engagement, and IT support for optimal use in Fetal Medicine.
Area of Science:
- Perinatal care
- Patient-reported outcomes
- Health psychology
Background:
- A core set of generic Patient Reported Outcome Measures (PROMs) was developed to assess patient health status and quality of life.
- Parents receiving a fetal anomaly diagnosis face unique challenges impacting their well-being.
- Integrating PROMs into clinical practice requires careful selection and adaptation.
Purpose of the Study:
- To identify and determine the optimal use of relevant PROMs for parents with a fetal anomaly diagnosis.
- To assess the usability and feasibility of adapted, setting-specific PROMs within a Dutch Fetal Medicine Department.
Main Methods:
- An expert panel of parents and healthcare professionals selected appropriate PROMs and their application.
- A pilot feasibility study involved parents completing PROMs, with results discussed with professionals.
- Usability and feasibility were evaluated through questionnaires and response time analysis.
Main Results:
- Two key PROMs were identified: 'ability to participate in social roles' and 'emotional distress (anxiety and depression)'.
- PROMs were completed efficiently (average 5.9 minutes), with a preference for digital completion at home.
- Parents found PROMs beneficial for communication with partners and healthcare providers.
Conclusions:
- PROMs show potential benefits in Fetal Medicine for improving patient-provider communication and understanding patient well-being.
- Challenges include complexity, professional engagement, and time constraints.
- Recommendations include the need for case managers, training, a user-friendly IT platform, and customized PROMs.
