Abstract

A high prevalence of sleep problems exists in children and adolescents with life-limiting conditions (LLC) and severe psychomotor impairment (SPMI). This study aimed to compare the impacts of various child-related (pain, epilepsy, repositioning, medical care) and environment-related (light, noise, TV/radio, open door) factors on sleep in this vulnerable population. Data were obtained through the “Sleep Questionnaire for Children with Severe Psychomotor Impairment” (SNAKE) by proxy assessment. n = 212 children (mean age: 10.4 years) were included in the analyses. Logistic and linear regression models were used to compare child- and environment-related factors against the global rating of children’s sleep quality, five SNAKE scales, children’s sleep duration, and sleep efficacy. Pain increased the risk of sleeping poorly four-fold (OR (odds ratio) = 4.13; 95% CI (confidence interval): 1.87–9.13) and predicted four sleep problems as assessed by the SNAKE. Children who needed to reposition during the night were at three times greater risk of sleeping poorly (OR = 3.08; 95% CI: 1.42–6.69). Three of the five SNAKE scales were predicted through nocturnal repositioning. Repositioning and epilepsy predicted a reduced sleep duration and low sleep efficacy. None of the environment-related factors exhibited statistically significant results. This study emphasizes the urgent need for reliable pain detection in the context of sleep disturbances in severely ill children.

Highlights

  • Life-limiting conditions (LLC) include a large variety of illnesses from which affected children and adolescents probably die before reaching adulthood [1,2,3]

  • The majority of affected children experience severe psychomotor impairments (SPMI), meaning that they are impacted by both physical disabilities and intellectual impairment [4,5]

  • Of the n = 226 children contained in the dataset, n = 212 children (mean age: 10.4, SD = 5.52; n = 99 (46.7%) female, n = 113 (53.3%) male) were eligible for analyses. n = 185 (88.1%) children were under 18 years of age, n = 25 (11.9%) were above 18 years of age

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Summary

Introduction

Life-limiting conditions (LLC) include a large variety of illnesses from which affected children and adolescents probably die before reaching adulthood [1,2,3]. The majority of affected children experience severe psychomotor impairments (SPMI), meaning that they are impacted by both physical disabilities and intellectual impairment [4,5]. Not malignant, but rather genetic (e.g., trisomy disorders), metabolic (e.g., mucopolysaccharidosis, cystic fibrosis) and neurologic diseases (e.g., West syndrome, epileptic encephalopathy) constitute the most common diagnoses [6,7,8]. These diagnoses are accompanied by numerous complex, simultaneously occurring, and often distressing symptoms [9]. With a prevalence rate of between 50–80%, sleep disturbances are one common symptom that is very exhausting for patients and their parents [3,5,10,11].

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