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2 REFERRALS TO THE SLEEP CLINIC FOR INDIVIDUALS WITH INTELLECTUAL DISABILITY Aeke Maas a,b, Wiebe Braam a,b, Philippe Colli a,c, Marcel Smits d, Robert Didde e ad Leopold Curfs a a Gouvereur Kremers Ceter, Maastricht Uiversity, The Netherlads; b s Heere Loo Zuid-Veluwe, Wekerom, The Netherlads; c Koraal Groep Gastehof, Urmod, The Netherlads; d Gelderse Vallei Hospital, Ede, The Netherlads; e Radboud Uiversity, Nijmege, The Netherlads INTRODUCTION Sleep problems are commo i childre ad adults with itellectual disability (ID). Prevalece rates up to 80% are reported i childre with ID up to 6 years of age. High rates of sleep problems persist ito adulthood. These problems are persistet ad ofte last for years. Parets ad professioal caregivers may ot ask for advice or help, because they hold the belief that sleep problems are part of the disability. Sometimes they are told by professioals that othig ca be doe to solve these problems. O the iitiative of the Gouvereur Kremers Ceter two multidiscipliary outpatiet sleep cliics are fuctioig at this momet. Each cliic is specialized i diagosis ad treatmet of sleep problems i childre ad adults with ID. Before the exploratory iterview ad the first visit to the sleep cliic the patiets sleepig habits are examied with the Sleep Questioaire (see Methods), the Childre s Sleep Hygiee Scale (CSHS; traslated by Va der Heijde et al ) ad a sleep diary (kept for 4 cosecutive days). Also edogeous melatoi levels i saliva were obtaied. I this paper we will discuss results of the Sleep Questioaire. METHODS Patiets: All idividuals referred to oe of our outpatiet sleep cliics for idividuals with ID i were icluded. Idividuals were referred maily by geeral practitioers, pediatricias ad physicias for idividuals with ID. Sleep questioaire: Parets or professioal caregivers were asked to fill out the Sleep Questioaire. This questioaire was adapted from Wiggs et al ad Didde et al 4,5. The questioaire cosisted of five parts. Part oe addressed demographic iformatio (e.g., presece of seizure disorders, breathig problems ad level of ID). The secod part covers curret (i.e. last moth) behaviors related to settlig to sleep, ight wakig ad early morig wakig. I part three, parets were asked to fill i at what times their child usually goes to bed ad wakes up i the morig. The fourth part assessed the frequecy of occurrece of several behaviors related to sleep (e.g., Grids teeth i sleep, Reluctat to go to bed ) o a 7-poit scale, from Never to Daily. Fially, the last part cotais items about parets impressio of NSWO 8, 007 9

3 their child s curret or past sleep problems, as well as previous treatmet of the child s sleep problem ad family s sleep. Defiitio of a severe sleep problem: Criteria for the defiitio of a severe sleep problem were established by Wiggs et al ad Didde et al 4,5. Three types of sleep problems were distiguished. Severe settlig problems occurred three or more ights a week, whereby the idividual took more tha hour to fall asleep ad parets were disturbed durig this time. Night wakig was defied as severe if it occurred three or more ights a week, ad if the idividual woke up for more tha a few miutes ad disturbed parets durig that time (e.g., co-sleepig, cryig). Fially, early morig wakig was defied as severe if the idividual woke up before 5:00 a.m. ad stayed awake durig three or more ights a week. A severe sleep problem was diagosed if a idividual had at least oe of the above three types of sleep problems ad these problem lasted for more tha 6 moths. RESULTS I 005 ad idividuals were see i oe of our outpatiet sleep cliics (0 males, 5 females). The mea age was 9 years ad 5 moths (rage: yrs moths to 9 yrs 5 moths). Forty eight patiets lived at home with their parets, i a group home ad 4 i a residetial facility. Seve patiets were 8 years or older ad of them lived at home with parets. Durig the day 8 childre wet to a special daycare ceter, 7 patiets wet to a adult activity ceter, 6 childre atteded special educatio, child atteded preschool special educatio, adult worked i a sheltered shop ad youg childre stayed at home. Table shows that of the idividuals referred to the sleep cliic (40%) had a geetic sydrome. Thirtee of the referred idividuals (4%) were diagosed with Autism or Autistic Spectrum Disorder. Table. Primary diagosis itellectual disabilities Aethiology Autism/Autistic spectrum disorder Geetic sydrome Dow sydrome Agelma sydrome Smith-Mageis sydrome Rett sydrome Mowat-Wilso sydrome Rhizomelic Chodrodysplasia Puctata (RCDP) Isodicetric chromosome 5 (IDIC 5) Rig chromosome q deletio sydrome 8q deletio (mosaic) 6 micro deletio Traslocatio 4;6 (mosaic) Other kow causes 7 Cerebral palsy Hydrocephalus West sydrome Itellectual disability of ukow cause 6 5 NSWO 8,

4 Level of ID was kow for 8 patiets, see Table for more iformatio. Noe of the patiets was blid. Seve patiets (%) were wheelchair depedet. Sevetee patiets (%) had epilepsy ad four (%, = 0) had reflux as far as parets or professioal caregivers kew. Table. Level of itellectual disability ( = 8) Level of ID Borderlie (IQ > 70) Mild (IQ 55-70) 6 Moderate (IQ 40-55) 8 Severe ((IQ 4-50) 6 Profoud (IQ < 5) 7 At referral twety five patiets (45%) already had medicatio related to sleep problems of whom 0 used melatoi (dosage rage:.0 to 9.0 mg). Two patiets used alimeazie, patiet used alprazolam, patiet used pipamperoe ad patiet used sodium valproate for their sleep problems. Four patiets took a combiatio of medicatios related to sleep problems (melatoi ad amitriptylie; melatoi ad alimeazie; melatoi ad temazepam if ecessary; alimeazie ad temazepam if ecessary). Oe patiet (aged 5 yrs 6 moths) used 5 mg melatoi at referral, but paret metioed that she had used 5 mg i the past (whe she was a -year-old). Eleve patiets (0%) already received medicatio related to epilepsy of whom also took medicatio related to sleep problems (i.e. melatoi, = ; alimeazie, = ). Table. Type of advice or treatmet received for sleep problems before referral to the sleep cliic ( = 7) Type of help Educatio/Geeral iformatio 7 Medical-operatio a Medical-medicatio 8 melatoi alimeazie promethazie temazepam diazepam pipamperoe lorazepam oxazepam alprazolam sodium valporate amitriptylie omeprazol ame of sleep medicatio ot specified Medical-other b Psychological/behavioral treatmet 8 Other 5 homeopathic Sesory Itegratio Therapy swaddle blaket Bach flower remedy a Draiage tube (grommet) placed/adeoidectomy; b Hospitalizatio/detal checkup NSWO 8,

5 Parets or professioal caregivers of 7 patiets (69%) had received advice or treatmet before they were referred to our sleep cliic. A combiatio of advices ad/or treatmets was possible, see Table. Obvious, oe of these were completely effective i these patiets. Medicatio, specifically melatoi, was tried out most ofte. I 6 out of 0 patiets (80%) melatoi was partially effective. Alimeazie was partially effective i 4 out of 7 patiets ad promethazie i out of 5. Sevetee parets or professioal caregivers received educatio or geeral iformatio o sleep ad sleep problems. This was partially effective i 8 patiets (47%). I out of 8 patiets psychological or behavioral treatmet was partially effective. At last, homeopathic treatmet was partially effective for out of 0 patiets. Accordig to our research criteria ad iformatio gathered by the Sleep Questioaire 4 (8%, = 5) patiets had a severe sleep problem at referral to the sleep cliic, most of them had severe ight wakig problems (88%), followed by problems with early morig wakig (%) ad settlig problems (%). Co-sleepig (isists o sleepig with somebody else) occurred or more times a week i 5 patiets (7%), all of them were livig at home with their parets. Daytime sleepiess ad bedwettig occurred or more times a week i respectively (5%) ad (8% ) patiets aged 5 yrs or older ( = 9). DISCUSSION It is remarkable that more tha oe third of the referred idividuals already received melatoi. Our cliical experiece is that i some patiets although melatoi treatmet was successful i the begiig, after a few moths ight wakig problems retured. Because of a persistig positive ifluece o settlig problems, melatoi treatmet was cotiued. I some patiets melatoi has a lastig positive effect o settlig problems, but ot o ight wakig problems. Further research to this pheomeo will be coducted. The distributio of the level of ID was quite equal. This is ot coform results from earlier research which foud more sleep problems i childre with more severe levels of ID tha childre with milder levels of ID. Perhaps parets ad professioal caregivers of idividuals with more severe levels of ID more ofte hold the belief that sleep problems are part of the disability ad do ot ask for advice or help tha those of idividuals with milder levels of ID. This may lead to our fidig that all levels of ID were preseted i our outpatiet sleep cliic i the same quatity. REFERENCES Wiggs L. Sleep disorders. I: Carr A, O Reilly G, Nooa Walsh P, McEvoy J, eds. The hadbook of itellectual disability ad cliical psychology practice. East Sussex: Routledge, 007: 7-4. Va der Heijde KB, Smits MG, Guig WB. Sleep hygiee ad actigraphically evaluated sleep characteristics i childre with attetio-deficit/hyperactivity disorder ad chroic sleep oset isomia. J Sleep Res 006; 5:5-60. Wiggs L, Stores G. Severe sleep disturbace ad daytime challegig behaviour i childre with severe learig disabilities. JIDR 996; 40: Didde R, Korzilius H, Va Aperlo B, Va Overloop C, De Vries M. Sleep problems ad daytime problem behaviours i childre with itellectual disability. JIDR 00; 46: Didde R, Korzilius H, Smits MG, Curfs LMG. Sleep problems i idividuals with Agelma sydrome. AJMR 004; 09: NSWO 8,