Many children with severe chronic neurological rare diseases cannot verbally communicate and suffer from sleep disturbances and daytime restlessness. Often, these symptoms are difficult to differentiate from pain. We have composed and evaluated the existing sleep assessment tools of this patient group (Tietze et al. 2012). Unfortunately, no appropriate assessment tool was found, so new tools had to be developed and validated.
SNAKE (Sleep questionnaire for children with severe psychomotor impairments) und HOST (Holistic assessment of sleep and daily troubles in parents of children with severe psychomotor impairments) assess sleep disturbances in patients and the resulting sleep disturbances in their parents (Blankenburg et al. 2013; Tietze et al. 2014a).
Both problems are closely correlated (Tietze et al. 2014b).
Sleep questionnaires:
Sleep questionnaire for children with severe psychomotor impairments (SNAKE)
Here you can find the user manual and the analysis tool:
Literature
Blankenburg M, Tietze A-L, Hechler T, Hirschfeld G, Michel E, Koh M (2013) SNAKE: the development and validation of a questionnaire on sleep disturbances in children with severe psychomotor impairments. Sleep Med 14:339-51
Tietze A-L, Blankenburg M, Hechler T, Michel E, Koh M, Schlüter B (2012) Sleep disturbances in children with multiple disabilities. Sleep Med Rev 16:117-27
Tietze A-L, Zernikow B, Hirschfeld G, Koh M, Otto M, Blankenburg M, et al. (2014a) Development and psychometric assessment of a questionnaire to assess sleep and daily troubles in parents of children and young adults with severe psychomotor impairment. Sleep Med 15:219-27
Tietze A-L, Zernikow B, Michel E, Blankenburg M (2014b) Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep. Dev Med Child Neurol 56:1187-93