Prevalence, nature, and correlates of sleep problems among children with fragile X syndrome based on a large scale parent survey.
OBJECTIVE
This study reports on current child sleep difficulties reported by parents of children with Fragile X syndrome (FXS). We address prevalence and type of sleep problems (e.g., difficulty falling asleep, frequent awakenings); type and effectiveness of medical and behavioral treatments (e.g., medication, surgery, environmental changes); and explore specific child and family characteristics (e.g., child age, child gender, co-occurring conditions) as possible predictors of child sleep difficulties.


METHODS
This study is part of a larger survey addressing needs of families with children with FXS. This article focuses on the families who responded to the survey sleep questions, had one or more children with the full mutation FXS, and who reside in the United States. The mean age for male and female children in this group was 15 years and 16 years respectively (N=1295).


RESULTS
Parents reported that 32% of the children with FXS currently experience sleep difficulties; 84% of those children are reported to have > or =2 current sleep problems. Problems falling asleep and frequent night awakenings were the most frequently reported difficulties; 47% of males and 40% of females received > or =1 medication to help with sleep. Children with more problematic health or behavioral characteristics had a higher likelihood of having current sleep problems.


CONCLUSIONS
Our survey provides the most representative sample to date of sleep problems in children with FXS or any other neurodevelopmental disability. This large scale survey establishes a foundation for the prevalence of sleep disorders in children with FXS.
Kronk
Rebecca
R
Children's Hospital of Pittsburgh of UPMC, Child Development Unit, Fragile X Center, UCLID Center, University of Pittsburgh, 45th & Penn, Pittsburgh, PA 15201, USA. becky.kronk@chp.edu
Bishop
Ellen E
EE
Raspa
Melissa
M
Bickel
Julie O
JO
Mandel
Daniel A
DA
Bailey
Donald B
DB
D000293:Adolescent; D000328:Adult; D017677:Age Distribution; D017668:Age of Onset; D002648:Child; D002675:Child, Preschool; D015897:Comorbidity; D005260:Female; D005600:Fragile X Syndrome / Q000453:epidemiology*; D006304:Health Status; D006306:Health Surveys; D006801:Humans; D008297:Male; D016017:Odds Ratio; D010290:Parents; D015995:Prevalence; D011788:Quality of Life; D017678:Sex Distribution; D012893:Sleep Wake Disorders / Q000453:epidemiology* / Q000628:therapy; D016896:Treatment Outcome; D014481:United States / Q000453:epidemiology; D055815:Young Adult
J Neurosci. 2008 Oct 8;28(41):10200-5
18842880
Disabil Rehabil. 2004 Mar 18;26(6):353-61
15204487
Am J Med Genet A. 2008 Aug 15;146A(16):2060-9
18570292
J Autism Dev Disord. 2002 Dec;32(6):553-61
12553592
JAMA. 2008 Nov 26;300(20):2419-21
19033593
Am J Intellect Dev Disabil. 2009 Nov;114(6):383-92
19792059
Pediatrics. 1992 Mar;89(3):395-400
1741210
J Clin Sleep Med. 2009 Apr 15;5(2):145-50
19968048
Pediatr Neurol. 2000 Sep;23(3):229-32
11033285
Am J Med Genet. 1994 Jul 15;51(4):317-27
7942994
J Autism Dev Disord. 2006 Aug;36(6):741-52
16897403
J Med Genet. 2003 Nov;40(11):793-6
14627665
Am J Ment Retard. 2005 Jul;110(4):243-52
15941362
Sleep. 2007 Sep;30(9):1213-9
17910393
Am J Ment Retard. 2004 Jul;109(4):275-84
15176919
Eur Child Adolesc Psychiatry. 2005 Feb;14(1):34-40
15756514
Am J Hum Genet. 2008 Jul;83(1):43-52
18589395
J Intellect Disabil Res. 2005 Apr;49(Pt 4):260-8
15816813
Prague Med Rep. 2008;109(4):268-74
19537677
J Neurosci. 2009 Feb 18;29(7):1948-61
19228950
Child Care Health Dev. 2001 May;27(3):201-21
11350450
Neuron. 2002 Jun 13;34(6):973-84
12086644
Pediatr Neurol. 2000 Sep;23(3):225-8
11033284
Dev Med Child Neurol. 2005 Feb;47(2):94-104
15707232
PLoS Biol. 2009 Jan 20;7(1):e16
19166269
Neuron. 2008 Oct 23;60(2):201-14
18957214
Psychol Sci. 2006 Aug;17(8):670-4
16913948
Am J Med Genet. 1999 May 28;84(3):250-61
10331602
Res Dev Disabil. 2001 Jul-Aug;22(4):255-72
11523951
Med J Aust. 1994 Aug 1;161(3):202-6
8035724
J Dev Behav Pediatr. 1991 Apr;12(2):108-14
2045483
J Am Acad Child Adolesc Psychiatry. 2008 Jul;47(7):736-739
18574398
Am J Ment Retard. 1998 May;102(6):590-601
9606468
Int J Dev Neurosci. 2002 Jun-Aug;20(3-5):443-8
12175885
Am J Med Genet. 2000 Dec 11;95(4):307-15
11186882
Child Dev. 2002 Mar-Apr;73(2):405-17
11949899
J Intellect Disabil Res. 2007 Jan;51(Pt 1):2-13
17181598
Brain Dev. 2000 Mar;22(2):88-92
10722958
J Sleep Res. 2008 Jun;17(2):197-206
18482108
Neuron. 2005 Mar 3;45(5):753-64
15748850
J Pediatr. 1987 Apr;110(4):642-6
3559818
Clin Neurophysiol. 2008 Jun;119(6):1242-7
18417419
Disabil Rehabil. 2005 Sep 2;27(17):977-83
16096251
J Intellect Disabil Res. 2002 Oct;46(Pt 7):537-47
12354310