Development of a Health Insurance Navigation Program for Long-Term Childhood Cancer Survivors.

Independent oral eating is a complex process that matures during development. These skills involve the coordination of neuro-regulatory centers, pharyngoesophageal musculature and cardiorespiratory stability, which can be challenging among high-risk infants admitted to the neonatal ICU (NICU) [–]. Swallowing difficulties can result from prematurity, comorbidities, or inadequate oral experiences, thus disrupting the development of suck-swallow-peristalsis-breathe coordination [, ]. As new technological advances are being implemented in the NICU, the survival rates of these infants are increasing. As a result, the swallowing difficulties related to morbidities is increasing and is estimated to be between 25 and 80% [–]; therefore, the cost and burden of chronic feeding difficulties is continually increasing []. Precise diagnosis and characterization of mechanisms of swallowing difficulties remain unclear due to the lack of objective standards and consensus among evaluation methods. Video-fluoroscopy swallow studies (VFSS) and high-resolution pharyngoesophageal manometry (HRPM) are the testing modalities utilized in the evaluation of aerodigestive and swallowing difficulties. VFSS can assess the transit of the liquid bolus extracted from the bottle as it propels through the anatomic regions involved in swallowing until the upper esophageal sphincter (UES). VFSS assessments are limited by shorter duration of evaluation [], the risks associated with radiation exposure [–], and the lack of application of consistent standardized practices for VFSS methods [–]. Furthermore, skilled personnel are necessary for VFSS as monitoring high-risk infants transported to the radiology suites is required [, ]. Moreover, high-risk infants have airway supports and assessment of swallowing skills can be challenging, as aerodigestive and cardiorespiratory comorbidity factors cannot be assessed with limited trials []. In contrast, HRPM measures the neuromuscular function, rhythms and relationships between the structures involved with oropharyngeal and pharyngeal-UES-esophageal phases of swallowing at the point-of-care [–]. Unlike VFSS, HRPM allows for sustained and prolonged evaluation of swallowing without any of the risks imposed by VFSS, while integration of cardiorespiratory measures can improve the evaluation of safety metrics and quality of data. However, structural anatomy cannot be visualized with HRPM, and skilled personnel are required to perform these studies as this is an emerging technological translation that can be cumbersome []. Given the lack of appropriate precision methods to assess swallowing in convalescing high-risk infants, commonly practiced non-evidence-based therapies include modifications to nipple flow rates or addition of thickeners, both of which may have unintended consequences (i.e., regression of oral feeding skill [, ], worsening of aerodigestive symptoms [–], sluggish gastrointestinal motility [, ], constipation from thickener use [], growth and weight gain disturbances [, ], and long-term consequences [, , ]).