Neonatal follow-up programs (NFUPs) are an essential component of the continuum of care for infants born preterm, ensuring continuity beyond the neonatal intensive care unit (NICU). In most countries with NICU services, structured follow-up is a widely adopted practice aimed at enhancing long-term medical and developmental outcomes for this high-risk population. NFUPs play a critical role in the screening, early diagnosis, and referral for neurodevelopmental disabilities in children born very preterm. These programs not only support clinical care but also serve as channels for the systematic collection of medium- and long-term outcome data. This information supports the evaluation of NICU quality indicators, informs neonatal clinical trials, and guides both clinical decision-making and family counselling1.

Different countries, including Canada, have their own neonatal networks that integrate systematic follow-up in clinical care and research. For example, the Canadian Neonatal Network (CNN) consists of researchers from 30 hospitals and 17 universities across Canada who conduct research and contribute data from their centers to a standardized NICU database (https://www.canadianneonatalnetwork.org/portal/). The Canadian Neonatal Follow-Up Network (CNFUN) is a network of health-care professionals from 25 NFUPs across eight Canadian provinces. CNFUN aims to develop common standardized assessments to be used at NFUPs and the data collected during these assessments is included in a national database. Thus, the standardization of follow-up within networks is complex as it involves multiple sites and health-care professionals with their own clinic-specific practices.

Currently, outcomes collected and reported in neonatal research reflect medical diagnoses with a strong focus on neurodevelopmental impairment2. Neurodevelopmental impairment (NDI) is commonly a primary or composite outcome in neonatal research. NDIs are frequently reported using a classification of ‘none,’ ‘mild,’ ‘moderate,’ or ‘severe’ and are typically based on a combination of standardized assessments at 18–24 months corrected age (CA) of developmental delay, cerebral palsy, and hearing or vision impairments. However, this approach has several limitations. Different neonatal networks have varying definitions of severe NDI. Developmental delay at such an early age does not necessarily predict long-term probability of a neurodevelopmental disability3. In addition, a one-time assessment to ‘diagnose’ developmental delay can be flawed if the child is uncooperative. Standardized developmental tests can be culturally biased, thus underestimating a child’s capacity due to, for example, language barriers. Finally, this approach overlooks individual functioning and quality of life. This classification of NDI was originally designed by clinicians and researchers to quantify the neurological impact of prematurity. Parental input was not solicited in both the development of the classification and its clinical application. Consequently, families report that current measures do not align with their understanding of their child’s development or with the outcomes that matter most to them, which do not necessarily include NDI4.

This disconnect between parental perspectives and clinical practice has ethical and scientific implications: (1) critical decisions are made based on a definition of NDI that lacks precision and family-centeredness, (2) observational studies use outcomes that may not be relevant and meaningful to the population of interest, (3) perinatal interventions and investigations may not be tailored to families’ preferences and values.

There is a need and ethical imperative to reframe neonatal outcomes through a lens that moves beyond deficit-based categories towards an approach that resonates with what matters most to families. This new perspective is aligned with the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) framework5. This model emphasizes function, participation, and the influence of environmental and contextual factors. While clinicians have traditionally focused on medical diagnoses and impairments, families are often more concerned with how prematurity affects their child’s everyday functioning, ability to participate in meaningful activities, and overall quality of life6.

This article explores the barriers and facilitators involved in integrating new outcome measures aligned with the ICF framework within the real-world context of a large neonatal follow-up network. We give examples and results of some of our findings to illustrate the complexity of implementing such measures in real life. Drawing on insights from our patient-oriented research experience, we examine how outcomes that are most important to families can be effectively identified, measured, and used to inform clinical practice, support quality improvement, and shape research priorities.