Abstract

Currently, no concrete figures on sleep disorders and sleep characteristics in children and adolescents with life-limiting conditions (LLC) and severe neurological impairment (SNI) based on pediatric palliative care professionals’ assessment and following an official classification system such as the International Classification of Sleep Disorders (ICSD-3) exist. The ICSD-3 sleep disorders of inpatient children and adolescents with LLC and SNI (N = 70) were assessed by professionals using a recording sheet (two-year recruitment period). A systematic sleep protocol was applied to identify patients’ sleep characteristics. Of these patients, 45.6% had sleep disorders, with the majority of them experiencing two different ones. Overall, the most frequently identified disorders were Chronic Insomnia and Circadian Sleep–Wake Disorder. Patients experiencing Chronic Insomnia showed more sleep phases during the daytime and more waking phases at nighttime than those unaffected. Patients with and without a Circadian Sleep–Wake Disorder additionally differed in the length of sleep phases during the daytime. Rapid changes between wakefulness and sleep were specifically characteristic of Hypersomnia. The study provides important insights into the prevalence and characteristics of individual ICSD-3 sleep disorders in pediatric palliative care. The findings may contribute to a targeted and efficient diagnosis and therapy of distressing sleep problems in seriously ill patients.

Highlights

  • Every year, around 21 million children and adolescents worldwide are affected by lifelimiting conditions (LLC) requiring palliative care [1]

  • The high prevalence rate of sleep disorders corresponds to related work, which indicates that, firstly, children and adolescents with severe neurological impairment (SNI) are apparently more frequently affected by sleep disorders than children and adolescents with a different type of underlying condition and, secondly, that different types of sleep disorders usually tend to occur cumulatively [8,29,30,31,32,33]

  • By consulting professionals on the basis of official ICSD-3 criteria, we further extend these statements regarding the prevalence of sleep disorders in pediatric palliative care patients, with the so far underrepresented diagnostic assessment of an essential group of persons

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Summary

Introduction

Around 21 million children and adolescents worldwide are affected by lifelimiting conditions (LLC) requiring palliative care [1]. These conditions are mainly genetic, neurological, or metabolic and, less commonly, oncological diseases [2]. A common feature these children and adolescents share is a variety of stressful symptoms [3,4]. In this regard, a challenging aspect is that many of the affected individuals are non-verbal due to severe neurological impairment (SNI) and are unable to communicate directly [3,5]. Sleep disorders do place an enormous burden on the sick child or adolescent and on its parents, who themselves experience a variety of physical and psychological problems [6,11,12,13,14]

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