CHILD-BRIGHT Parent Voices: Implementing Patient-Reported Outcome Measures (PROMs) in follow-up care of preterm children using a hybrid implementation-effectiveness design

Contact

Catherine Demers (UQTR): catherine.demers@uqtr.ca

Principal Investigators

Thuy Mai Luu (CHU Sainte-Justine, Université de Montréal)

Jehier Afifi (IWK Health, Dalhousie University)

Stephanie Glegg (BCCHR, University of British Columbia)

Project summary

Research on outcomes of children born preterm has traditionally focused on brain-based developmental diagnoses and/or impairment, such as cerebral palsy, developmental delay, and hearing or visual loss. This focus, while meaningful to scientists and clinicians, may not always be as relevant to parents. In our CHILD-BRIGHT Phase 1 research, families identified parent-reported outcome measures (PROMs) that were meaningful to all three groups and changed the focus from medical diagnosis to function--what the child can do. We listened to parent voices. This project will support the implementation of PROMs into standard clinical care and research data collection for children born very preterm across Canada.

Research theme: BRIGHT Realities – Projects to effectively bring interventions into the lives of children and their families

Audience: Children born preterm and their families.

Phase 1 study: Parent-Centred Evidence-Based Care for Premature Graduates (Parent-EPIQ) 

Project updates

2024-25

We have conducted surveys with 48 parents, caregivers, and health care professionals involved in neonatal follow-up clinics in Canada to identify the two most relevant and meaningful Patient-Reported Outcome Measures (PROMs) we will implement. We are now conducting interviews with the same groups to determine the best way to implement them in the clinics. We aim to start implementing this in the summer or fall.

2023-24

The Parent Voices team has completed its study protocol and is preparing it for publication. The project has also received research ethics approval at one of its study sites.