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Integrated follow-up of former extremely preterm infants: how to do it?
Hector Boix1, Alba Gómez2, Paula Serrano2
1Hospital Universitari Quironsalud Dexeus, Neonatal Intensive Care Unit, Barcelona, Spain. hector.boix@quironsalud.es.
Insights
Follow-up care for extremely preterm infants is crucial for addressing long-term neurodevelopmental, growth, and sensory issues. Integrating caregiver perspectives and extending monitoring into school age optimizes outcomes for this vulnerable population.
Area of Science:
- Neonatal Medicine
- Developmental Pediatrics
- Public Health
Background:
- Extremely preterm (EP) infants face significant risks for long-term complications despite advances in neonatal survival.
- Current follow-up strategies focus on neurodevelopment, growth, respiratory, and sensory outcomes, alongside family-centered care.
Purpose of the Study:
- To review current evidence and international consensus on post-discharge follow-up for EP infants.
- To emphasize key domains including neurodevelopmental assessments, growth, pulmonary and sensory screening, and family support.
- To highlight the evolving need for integrated, adaptable, and extended follow-up models.
Main Methods:
- This narrative review synthesizes existing literature and expert consensus on EP infant follow-up.
- It examines established and emerging assessment tools for various developmental domains.
- It discusses diverse global models of care delivery.
Main Results:
- Early identification of conditions like cerebral palsy and cognitive deficits is vital using tools like the General Movements, Hammersmith, and Bayley Scales.
- Nutritional, respiratory, vision, and hearing surveillance are essential components of comprehensive care.
- Patient-reported outcome measures and mental health screening are increasingly important for a holistic approach.
Conclusions:
- Coordinated, long-term follow-up extending into early childhood is critical for EP infants.
- Integrating caregiver perspectives and extending developmental monitoring beyond early childhood improves functional outcomes.
- Adaptable, interdisciplinary follow-up frameworks are necessary to reduce disparities and optimize care for EP infants.
Abstract:
Extremely preterm (EP) infants, defined as those born before 28 weeks of gestation or weighing less than 1000 g, face high rates of long-term complications despite improved neonatal survival. This narrative review summarizes current evidence and international consensus on the post-discharge follow-up of EP infants, with emphasis on neurodevelopment, somatic growth, pulmonary and sensory outcomes, and family-centered care. Key domains include early identification of cerebral palsy using neurological assessments such as the General Movements and Hammersmith scales, cognitive monitoring with standardized tools (e.g., Bayley Scales), nutritional and growth surveillance beyond anthropometrics, structured respiratory evaluations including immunoprophylaxis, and timely screening for vision and hearing deficits. In addition, the integration of caregiver-reported outcomes and mental health screening is essential to tailor follow-up strategies and support parental wellbeing. Models of care vary globally, from tertiary-based programs to hybrid and community-integrated approaches, highlighting the need for adaptable, interdisciplinary frameworks. Coordinated long-term follow-up that extends into early childhood is vital to reduce disparities and optimize functional outcomes in this vulnerable population. What is Known: • Extremely preterm infants are at high risk for long-term neurodevelopmental, respiratory, nutritional, and sensory complications, even when neonatal survival improves. • Neurodevelopmental tools such as the Bayley, General Movements, and Hammersmith Scales are widely used for early screening of cognitive and motor outcomes. What is New: • It highlights the importance of Patient-Reported Outcome Measures in complementing clinical surveillance with caregiver perspectives. • It underscores the limitations of early assessments alone and supports extending developmental monitoring into the preschool and school-age years.
