Abstract

Sleep problems are a common and serious issue in children with life-limiting conditions (LLCs) and severe psychomotor impairment (SPMI). The “Sleep Questionnaire for Children with Severe Psychomotor Impairment” (Schlaffragebogen für Kinder mit Neurologischen und Anderen Komplexen Erkrankungen, SNAKE) was developed for this unique patient group. In a proxy rating, the SNAKE assesses five different dimensions of sleep(-associated) problems (disturbances going to sleep, disturbances remaining asleep, arousal and breathing disorders, daytime sleepiness, and daytime behavior disorders). It has been tested with respect to construct validity and some aspects of criterion validity. The present study examined whether the five SNAKE scales are consistent with parents’ or other caregivers’ global ratings of a child’s sleep quality. Data from a comprehensive dataset of children and adolescents with LLCs and SPMI were analyzed through correlation coefficients and Mann–Whitney U testing. The results confirmed the consistency of both sources of information. The highest levels of agreements with the global rating were achieved for disturbances in terms of going to sleep and disturbances with respect to remaining asleep. The results demonstrate that the scales and therefore the SNAKE itself is well-suited for gathering information on different sleep(-associated) problems in this vulnerable population.

Highlights

  • Referring to data from the UK, approximately 32 per 10,000 children and adolescents suffer from life-limiting conditions (LLCs), with a rising trend [1]

  • Results show that the two examined sources of information, the global rating of a child’s sleep, which directly measures the parents’ assessment of their child’s sleep quality, and the five SNAKE

  • Analyses reveal positive correlations between all five scales and the global rating. Even though this result must not be interpreted as evidence of causality, it is an important clue that both sources of information tend towards the same direction. This assumption is supported by the fact that in comparison with children who slept very well or well during the past four weeks, children who were identified as having slept only satisfactorily, poorly or very poorly during that period concurrently obtained significantly higher values for each of the five SNAKE scales and suffered from more sleep problems than children in the other group

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Summary

Introduction

Referring to data from the UK, approximately 32 per 10,000 children and adolescents suffer from life-limiting conditions (LLCs), with a rising trend [1]. With an assumed prevalence of 60–80%, sleep problems are a common issue in these children and adolescents [4]. In accordance with the “International Classification of Sleep disorders” (ICSD-2; [5]), sleep problems can generally be categorized into excessive sleepiness, sleeplessness, and behavioral disturbances [6]. There are several studies that confirm the relationship between severe chronic illnesses and sleep disturbances, such as difficulties in initiating and maintaining sleep [7,8,9,10], sleep-associated respiratory problems [4,11,12], daytime sleepiness [13], parasomnia [14,15], and irregular sleep–wake rhythm [16,17].

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