Among the selected six chronic diseases, only three specific evidence-based clinical guidelines addressed acute medical management of adults held in custody.7,8,9 No professional organization had pediatric-specific evidence-based clinical guidelines tailored to the needs of youth in custody, Table 1.7,8,9,10,11,12 This lack of age-specific guidelines for chronic disease care for youth highlights the need for further attention to the unique circumstances of the health needs of children and adolescents in custodial settings.

Youth in custody face numerous challenges in accessing healthcare services, such as limited resources, fragmented healthcare systems, and insufficient coordination between prison healthcare teams and external healthcare providers. Moreover, custodial facilities may lack the necessary infrastructure and specialized healthcare personnel to manage the time-sensitive acute medical needs of youth with chronic diseases. Despite the limitations of custodial facilities in healthcare delivery, the United States Supreme Court has held that “deliberate indifference” to the “serious medical needs” of incarcerated people violates the Constitution.13 We recognize the spirit of the court decision: individuals held in custody should receive the same level of care as if they were not in custody. However, the absence of clinical care guidelines that address the unique custodial setting has three immediate consequences. First, no actionable strategy is established to ensure youth with chronic disease exacerbation receive time-sensitive health care. Second, healthcare providers in these custodial facilities do not benefit from the evidence-based standards required for ongoing quality improvement strategies. Third, there is no accountability when the health care provider or system fails to deliver standard care in the custody setting. Unfortunately, the current absence of evidence-based guidelines can lead to a below-the-standard care approach for acutely ill youth experiencing a time-sensitive exacerbation of their chronic disease.

A unique challenge in implementing clinical standards for youth in custody is the absence of best practices for communicating between the healthcare staff in custody, the healthcare providers outside the community medical facility or practice (general pediatric providers and sub-specialty providers), and the youth and their parents. Given the wide range of healthcare needs of the incarcerated youth population, a clear and actionable communication strategy and a healthcare plan are required to ensure health equity for children with chronic disease; pediatric sub-specialists and pediatricians with expertise in carceral healthcare should be engaged in developing and implementing evidence-based guidelines and institution-specific protocols for care coordination. Strategies that include telemedicine, shared electronic health records, and multi-disciplinary care teams that involve specialty care providers inside facilities and in the community can facilitate seamless and timely communication between the two healthcare facilities. An important step towards this goal is ensuring pediatric sub-specialists understand the unique aspects of the custodial settings concerning their patient’s health and healthcare and acknowledge their role in championing the health of young people in custody. To our knowledge, few pediatric subspecialty training programs include learning objectives on managing acute exacerbations of the chronic care of children or adolescents held in custody.

We identified six chronic diseases requiring acute management while youth are held in custody. None of the professional society’s established developed age-specific evidence-based guidelines, Table 1. The list of chronic diseases that affect children and require timely management is far greater than the six chronic diseases that we identified, including the most common chronic condition in youth held in custody, mental illness. Given the prevalence and acute mental health care crisis in the United States, the subject matter is worthy of a stand-alone commentary. Furthermore, we did not include the importance of chronic illness treatment and ongoing modifiable healthcare plans for entry and exit from the carceral facility back into the community.