1R01NR018192-01A1: Symptom Trajectories in Infants and Toddlers at Risk for Chronic Feeding Problems
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Abstract
After discharge from neonatal intensive care, 40-70% of infants with unresolved medical concerns will have symptoms of problematic feeding that risk progression to a chronic feeding disorder. There is a delay in appropriate symptom management until behavioral symptoms are strong, despite reports of biological symptoms (e.g., visceral pain, constipation, and fatigue) preceding behavioral symptoms. Linking early biological symptoms with subsequent behavioral symptoms is needed. Developing evidence to support a shift to earlier detection and care has been limited by lack of valid biological and behavioral symptom assessment that spans early periods of feeding. To solve this problem, our team has developed a set of progressive age-standardized, valid and reliable measures that can begin to be used at birth: (1) biobehavioral symptoms of problematic feeding, (2) solid-food eating skill development, (3) impact of feeding on the parent and family, and (4) symptom management strategies. In the proposed study, we will prospectively follow 285 infants at risk for feeding problems from discharge from neonatal intensive care through age 24 months to determine the trajectory of symptom profiles. At discharge, we will measure constraints on child biological function that may predict later symptom profiles. Constraints will include infants’ physiologic stability, which affects engagement in feeding and the dynamics of sucking, swallowing, and breathing; gastrointestinal function, which impacts gut readiness for and response to food; and autonomic nervous system regulation, which affects coordination of sucking, swallowing, and breathing, and provides metabolic resources needed to eat and digest food. We will examine parents’ strategies to manage symptoms and the impact of these symptoms on the parent and family and relate these strategies to change in symptoms over time to increase understanding of the family dynamic of feeding problem development. We will concentrate assessments in the first year with follow-up in the second year to capture the early onset of potentially chronic feeding disorders and critical child outcomes of solid-food eating skill development and growth and neurodevelopment. Because the process of learning to eat is complex -- especially when children have medical concerns -- we will use a concurrent explanatory mixed-methods longitudinal design to obtain a more complete description of children’s and families’ experiences. Interviews with a subset of parents with children with high symptom scores at four time points will strengthen interpretation of the quantitative data. Analysis of quantitative data will provide new knowledge of important child and feeding environment variables affecting symptom trajectories and outcomes, thus stratifying risk early and targeting symptom profiles needing clinical attention. Analysis of the interview data and integration with the quantitative data will enhance understanding of the challenges of managing specific symptoms and how challenges change across symptom trajectories.