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Background: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other measures of sleep diagnostics. Methods: In this monocentric prospective study N = 26 children and adolescents with life-limiting conditions treated on a pediatric palliative care unit were assessed. For three consecutive nights they wore an actigraph; the 24-hours sleep protocol documented by nurses and the Sleep Screening for Children and Adolescents with Complex Chronic Conditions (SCAC) answered by parents were analyzed. Patient characteristics and the parameters sleep onset, sleep offset, wake after sleep onset (WASO), number of wake phases, total sleep time (TST) and sleep efficiency (SE) were descriptively examined. Percentage bend correlations evaluated the three measures' concordance. Results: Descriptively, and except for the number of waking episodes, the different measures' estimations were comparable. Significant correlations existed between actigraphy and the sleep protocol for sleep onset (r = 0.83, p = < 0.001) and sleep offset (r = 0.89, p = < 0.001), between actigraphy and SCAC for SE (r = 0.59, p = 0.02). Conclusion: Agreement of actigraphy with the focused sleep measures seems to be basically given but to varying degrees depending on the considered parameters. [ABSTRACT FROM AUTHOR]

Summary: Children and adolescents with complex chronic conditions, including those with life‐threatening or life‐limiting conditions, are a heterogeneous population. Many individuals exhibit sleep abnormalities that are measurable by proxy questionnaires. No suitable instrument to assess the wide range of different complex chronic conditions is currently available. The aim of the present study was to develop a screening tool—the Sleep Screening for Children and Adolescents with Complex Chronic Conditions—to effectively obtain sleep behaviour information in this population. Following a mixed‐method design, potential items for the Sleep Screening for Children and Adolescents with Complex Chronic Conditions questionnaire were defined through literature research and expert meetings. In a pre‐test with N = 60 family and professional caregivers, the items' relevance and comprehensibility as well as the instrument's overall design were assessed. For the main test, N = 315 participants were recruited in three tertiary paediatric hospitals. A principal components analysis detected the questionnaire's scales. Item analysis focused on mean values, range, difficulty and discriminatory power. Convergent validation of the Sleep Screening for Children and Adolescents with Complex Chronic Conditions was assessed via correlations between scale items. Most patients had neurological or neuromuscular diseases. Four scales ("Falling and staying asleep", "Sleep‐associated respiration and arousal", "Daytime sleepiness" and "Sleep‐associated movements") emerged. The item analysis showed satisfactory discriminative power. In the preliminary validation, all scales correlated positively with a child's care level and with various sleep circumstances items. Three scales additionally correlated with the number of complex chronic condition diagnoses. This newly developed questionnaire can provide clinicians with first indications of possible sleep problems in a growing paediatric population. [ABSTRACT FROM AUTHOR]

In children with life-limiting conditions and severe neurological impairment receiving pediatric palliative care (PPC), the degree to which actigraphy generates meaningful sleep data is uncertain. Benchmarked against the gold standard polysomnography (PSG), the applicability of actigraphy in this complex population was to be assessed. An actigraph was placed on N = 8 PPC patients during one-night polysomnography measurement in a pediatric tertiary care hospital's sleep laboratory. Patient characteristics, sleep phase data, and respiratory abnormalities are presented descriptively. Bland-Altman plots evaluated actigraphy's validity regarding sleep onset, sleep offset, wake after sleep onset (WASO), number of wake phases, total sleep time (TST) and sleep efficiency compared to PSG. PSG revealed that children spent most of their time in sleep stage 2 (46.6%) and most frequently showed central apnea (28.7%) and irregular hypopnea (14.5%). Bland-Altman plots showed that actigraphy and PSG gave similar findings for sleep onset, sleep offset, wake after sleep onset (WASO), total sleep time (TST) and sleep efficiency. Actigraphy slightly overestimated TST and sleep efficiency while underestimating all other parameters. Generally, the Actiwatch 2 low and medium sensitivity levels showed the best approximation to the PSG values. Actigraphy seems to be a promising method for detecting sleep problems in severely ill children. [ABSTRACT FROM AUTHOR]

Background: For children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries. Methods: Online survey with in-country experts from N = 33 European countries. Results: Pediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service. Conclusions: Pediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed. [ABSTRACT FROM AUTHOR]