Snake: the development and validation of a questionnaire on sleep disturbances in children with severe psychomotor impairment.

OBJECTIVE: Sleep disturbance and daytime restlessness are present in 50% to 80% of children with severe psychomotor impairment due to neurologic or other complex diseases. Although these issues severely impair the quality of life of the children and their families, they are not well addressed or managed by professionals. The lack of validated assessment tools prevents further research and the development of adequate therapies. Our aim is to develop and validate a sleep questionnaire for these children that could be used both for clinical management and systematic research. METHODS: The sleep questionnaire for children with severe psychomotor impairment (Schlaffragebogen für Kinder mit Neurologischen und Anderen Komplexen Erkrankungen, SNAKE) is based on expert opinion and consultation with parents. The psychometric quality of the questionnaire was assessed in a sample of 224 children with severe psychomotor impairment. RESULTS: Confirmative factor analysis showed that SNAKE comprises of five factors (based on ICSD-2). Fit indices, analysis of item characteristics and convergent validity (coherence with measures of sleep [i.e., sleep efficiency]) and correlation with selected subscales of the Sleep Disturbance Scale for Children (SDSC) were good. Re-test analysis (n=62) depicted high stability and good replication of validity. CONCLUSIONS: SNAKE is a reliable and valid tool for the diagnosis of sleep disturbances in children with severe psychomotor impairment. The SNAKE questionnaire is the first tool that addresses the specific relationship between sleep disturbance and severe disability in children.

Sleep disturbances in children with multiple disabilities.

INTRODUCTION: Although sleep disturbances in disabled children are of central clinical importance, there is little research on that topic. There are no data available on frequency, severity or aetiology of sleep disturbances and related symptoms in this specific patient group. OBJECTIVE: To review the current state of research and outline future research objectives. METHODS: We searched international scientific databases for relevant publications from 1980-2009. From all papers qualifying for further analysis we retrieved systematic information on sample characteristics, sleep assessment tools and their test quality criteria, and core findings. RESULTS: 61 publications including 4392 patients were categorized as "mixed" (reporting on heterogeneous diagnoses), or "specified" papers (specific diagnoses) based on international classification of diseases (ICD) 10 classification. To assess sleep disturbances, most authors relied on subjective instruments with poor psychometric quality. Mean prevalence of sleep disturbances was 67% (76%,"mixed" group; 65%, "specified" group). In children suffering severe global cerebral injury, the prevalence of sleep disturbances was even higher (>90%). The most frequent symptoms were insomnia and sleep-related respiratory disorders. Some of these symptoms were closely associated with specific medical syndromes. CONCLUSION: There is an urgent need for sleep disturbance assessment tools evaluated for the patient group of interest. By use of validated assessment tools, patient factors, which may be crucial in causing sleep disturbances, may be investigated and appropriate treatment strategies may be developed.

Parental catastrophizing about their child's chronic pain: are mothers and fathers different?

Preliminary evidence suggests that parental catastrophizing about their child's pain may be important in understanding both parental responses to their child's pain and the child's pain experience. However, little is known about potential differences between mothers and fathers. There were three aims of the present study addressing this lack of knowledge: (i) to investigate the three-factor structure of the German version of the Parental Pain Catastrophizing Scale (PCS-P) (Goubert et al., 2006) in mothers and fathers of children with chronic pain, (ii) to explore differences between mothers and fathers in parental catastrophizing, (iii) to investigate the contribution of parental catastrophizing on the child's chronic pain problem and pain-related parent behavior. In a sample of 128 mothers and fathers of paediatric chronic pain patients, the invariance of the PCS-P was evaluated. Results replicated the previously established three-factor structure (i.e. rumination, magnification and helplessness) in both groups. Mothers reported higher levels of catastrophizing as compared to fathers. Specifically, mothers and fathers differed on levels of rumination; the two groups did not differ in magnification and helplessness. Maternal but not paternal catastrophizing contributed significantly in explaining the child's pain intensity whereas neither mothers' nor fathers' catastrophizing were significantly related to the child's disability. Both maternal and paternal catastrophizing contributed significantly to heightened parental solicitous responses. Fathers' but not mothers' catastrophizing also contributed to heightened distracting responses. The present findings attest to the importance of maternal and paternal catastrophizing for the child's pain characteristics and pain-related parent behavior, which are both relevant for treatment conceptualization.