Insights into the Frequency and Distinguishing Features of Sleep Disorders in Pediatric Palliative Care Incorporating a Systematic Sleep Protocol

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.

Clinical characteristics of children with severe neurologic impairment: A scoping review

“…Gastroesophageal reflux and feeding tubes ( n = 57, 56%) was the most common topic, with subtopics of gastroesophageal reflux ( n = 7), 7,42–44,102–104 gastrostomy tube outcomes ( n = 24), 9,39,45,46,56–65,81–84,105–110 and antireflux procedures ( n = 26) 8,47–55,66–71,85,86,111–118 . Other topics included aspiration and respiratory issues ( n = 13, 13%) 72,73,87–93,119–122 ; symptoms, palliative care, and quality of life ( n = 12, 12%) 38,41,74–77,94–97,123,124 ; growth and endocrinology ( n = 10, 10%) 78,98,99,125–131 ; caregivers and care burden ( n = 7, 7%) 10,37,40,79,80,100,132 ; other ( n = 2, 2%) 101,133 ; and musculoskeletal ( n = 1, 1%) 134 . Most studies ( n = 54, 53%) were retrospective cohorts or case series (Supporting Information: eFigure ), with a median sample size of 48 patients (range 20–240).…”

Applicability of Actigraphy for Assessing Sleep Behaviour in Children with Palliative Care Needs Benchmarked against the Gold Standard Polysomnography

“…In the clinical (but also the home) setting, actigraphy offers the potential to provide evidence of such influences by comparing the acquired data with symptom records from care providers, e.g., through the so-called 24-h sleep protocol. This may also increase the overall understanding and knowledge of how various symptoms interact with sleep in this complex sample and whether, in turn, there may be “typical” associations with, for instance, medication administration or dosing [ 57 , 58 ].…”

Participatory Design of an Electronic Medical Record for Paediatric Palliative Care: A Think-Aloud Study with Nurses and Physicians

“…For example, as our results may indicate, the current representation of the sleep patterns in PCM was not sufficient for the setting of PPC to the participants. As sleep disorders are highly prevalent in the context of PPC, a view to assess the progression of changes over 24 h should be added as a further improvement of the PMC [54,55]. Additionally, regarding the documentation of symptoms, numerous participant requests were identified that could lead to an improvement of the documentation.…”