Abstract
Recent advances in medicine have allowed children with chronic life-threatening disorders to survive longer than ever before with the use of complex medical device technology (e.g., mechanical ventilation, dialysis, etc.). The care of children with chronic pulmonary disorders and respiratory-technology dependence is often complex, involving a high level of ongoing interaction between caregivers and the health care team. Unmanaged, non-standardized transition of respiratory technology dependent (RTD) patients to adult care potentially increases the risk of adverse outcomes. Pediatric Pulmonary programs at US children's hospitals were surveyed to ascertain whether a standardized process is utilized for transitioning RTD patients from pediatric to adult subspecialty pulmonology care. Pediatric pulmonology programs with Accreditation Council for Graduate Medical Education certification were invited to participate in an electronic survey inquiring about practices and processes used to transition RTD patients from pediatric to adult pulmonology. The majority of respondents, 78.1% (25/32), reported that they do not utilize a standard protocol for transition while 41.4% (12/29) have no process in place. No program surveyed uses a designated transition leader. Referral to an adult pulmonologist within the same health system occurs more frequently than referral to private practice. Forty-three percent are not satisfied with involvement from the adult pulmonology care team. Coordination of care with other specialty services such as adult otolaryngology is provided by 31% of respondents. Of respondents, 13.8% assessed "readiness to transition" to adult pulmonary for RTD patients. Pediatric pulmonary providers are not satisfied with their current practices or involvement from the adult team, and only 24% track the transition process until the first visit with the adult pulmonologist. The survey results highlight a lack of standardized transition programs at US children's hospitals for the transfer of RTD patients from a pediatric to an adult care setting. Improvement in the standardized management of transitions of complex RTD patients from pediatric to adult care may decrease the risk for adverse health outcomes and the stresses associated with changing the health care setting.
Published Version
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