International consensus on sleep problems in pediatric palliative care: paving the way

/Background: Sleep problems constitute a common and heterogeneous complaint in pediatric palliative care (PPC); they often contribute to disease morbidity and cause additional distress to children and adolescents and their families, already facing the burden of life-threatening and life-limiting conditions. Despite the significant impact of sleep problems, clinical evidence is lacking. The application of general pediatric sleep medicine recommendations appears insufficient to address the unique challenges of the PPC dimension in terms of disease variability, duration, comorbidities, complexity of needs, and particular features of sleep problems related to hospice care. Therefore, we initiated an international project aimed at establishing a multidisciplinary consensus. A two-round Delphi approach was adopted to develop recommendations in the areas of definition, assessment/monitoring, and treatment of sleep problems in PPC. After selecting a panel of 72 worldwide experts, consensus (defined as ≥75% agreement) was reached through an online survey. At the end of the two voting sessions, we obtained 53 international consensus recommendations based on expert opinion outlining the definition, diagnosis, and treatment of sleep problems, particularly in the PPC population. This study addresses the need to personalize sleep medicine's approach to the PPC setting and its peculiarities. It provides the first international consensus on managing sleep problems, highlighting the urgent need for global guidance to improve sleep-related distress in this vulnerable population and their caregivers. Our findings represent a crucial milestone that will hopefully enable the development of guidelines in the near future.