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Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Development and implementation of measurement-based care for children and youth with complex mental and
Victoria Rombos1, Zainab O Salami1, Genevieve Ferguson1
1Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
Insights
Measurement-based care (MBC) implementation in pediatric neurodevelopmental services shows promise. Engaging clinicians and families, and integrating PROMs into workflows, are key for successful, evidence-based care for children with complex needs.
Area of Science:
- Pediatric Neurodevelopmental Health
- Health Services Research
- Clinical Informatics
Background:
- Measurement-based care (MBC) is vital for informing clinical decisions using patient-reported outcome measures (PROMs).
- Application of MBC in neurodevelopmental pediatric populations with complex co-occurring conditions is limited.
- This study addresses the gap by implementing and evaluating MBC in such a population.
Purpose of the Study:
- To implement and evaluate Measurement-based Care (MBC) in Ontario's Extensive Needs Service (ENS) program for neurodevelopmental pediatric populations.
- To assess the feasibility and impact of integrating patient-reported outcome measures (PROMs) into clinical workflows.
- To gather insights for optimizing MBC in complex pediatric care settings.
Main Methods:
- MBC was implemented across three hospital sites serving neurodevelopmental pediatric populations.
- Patient-reported outcome measures (PROMs) were selected through literature review and stakeholder consultation.
- A logic model guided evaluation, with data collected at baseline and intervals; clinician training was provided.
Main Results:
- 381 participants entered the program between April 2023 and April 2025.
- PROM completion rates were highest at baseline and decreased over time.
- Shorter PROMs demonstrated higher completion rates than longer ones.
Conclusions:
- Successful MBC implementation in complex pediatric populations requires early and continuous engagement of clinicians and families.
- Integration of MBC into care processes is crucial for its effectiveness.
- MBC is essential for guiding clinical care, treatment planning, and evaluating new therapies for children with complex needs.
Introduction:
Measurement-based care (MBC) is a structured approach to collecting patient-reported outcome measures (PROMs) to inform clinical care. While MBC is routinely used in mental health settings, its application in neurodevelopmental populations-particularly those with co-occurring physical and mental health conditions-remains limited.
Methods:
MBC was implemented across three Ontario hospital Extensive Needs Service (ENS) sites in Toronto, Hamilton, and Ottawa. Selection of PROMs was informed by a focused literature review and consultation with clinicians, researchers, and family advisors. A logic model was developed to guide evaluation and link measures to anticipated outcomes. Clinicians received training and support to integrate PROMs into clinical workflows. Data were collected at baseline and at regular intervals.
Results:
Between April 2023 and April 2025, 381 participants entered the ENS program, and 36 were discharged. Their duration of participation ranged from 3 to 20 months. Each site engaged clinical staff in PROM completion. Completion rates for measures were higher at baseline and declined over time. Shorter PROMs showed higher completion rates compared to longer ones.
Discussion:
This novel implementation of MBC provides important insights for MBC in pediatric populations with high complexity. Early and ongoing engagement of both clinicians and families is important to success, which is also closely tied to the degree to which MBC is integrated into care processes. MBC remains necessary to guide clinical care and treatment planning for children with complex, intersecting needs. It is also helpful when evaluating new programs and generating foundational evidence on the effectiveness of therapies for this population.
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