Clinical Assessment of Children and Young People with Sleep Problems and Co-Morbid Neurodevelopmental Disorders

Abstract

Sleep disorders are very common among children and young people (CYP) with neurodevelopmental, emotional, behavioural and intellectual disorders (NDEBID). NDEBID include several conditions such as Attention Deficit/Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), Cerebral palsy (CP), Epilepsy and Learning (Intellectual) disorders. Extant literature have reported up to 80% of CYP with NDEBID experiencing different types of chronic insomnia, compared to 3–36% of their otherwise normally developing counterparts. Sleep disorders among CYP with NDEBID have severe negative consequences on the affected individuals and their families. Chronic sleep deprivation causes behavioural, memory and attention problems, mood disorders, impaired cognitive development, learning abilities, and school performances. It also significantly increases the stress level and impact the wellbeing of other family members and impair family cohesion. Sleep disorders therefore further aggravate both internalising and externalising behaviours, emotional wellbeing and daily functioning of CYP with NDEBID. This chapter provides a brief summary of the various important aspects of sleep physiology, aetiology, classification and prevalence of sleep disorders among CYP with NDEBIDs. It outlines various behavioural, non-pharmacological management strategies and pharmacotherapy. Practical tips for clinicians are outlined in an easy-to read flow chart, including sections on assessment, investigations, care plan formulation and follow-up.

1. Introduction

Sleep problems affects all age group of children from preschool age to adolescence, with a prevalence of up to 80% reported among children and young people (CYP) with Neurodevelopmental (and related Neurodisability), Emotional, Behavioural, Intellectual and Disorders (NDEBID). This is disproportionately higher than the prevalence of 3–36% among typically developing children and adolescents [1, 2].

The prevalence of sleep disorders in CYP with NDEBID is also related to the degree of their disability. For example the prevalence of sleep disorders among adolescents with learning disability varies between 26% for moderate disability to 44% for severe disability. This compares with prevalence of 15–19% among adolescents with no disability [1].

Sleep disorders among CYP with NDEBID have severe negative consequences on the affected individuals and their families. Even among normally developing CYP, chronic sleep deprivation causes behavioural problems, impaired cognitive development and learning abilities, poor memory and attention problems, mood disorders and impaired school performances [3, 4, 5]. It also increases the risk of other health outcomes, such as obesity, cardiovascular, immunity, growth and metabolic consequences [6, 7]. It also significantly increases the stress level and impact the wellbeing of other family members and impair family cohesion [8]. Sleep disorders therefore further aggravate and exacerbate both internalising and externalising behaviours, emotional wellbeing and daily functioning of CYP with NDEBID. Appropriate management of sleep disorders ameliorate the short-term health and emotional consequences, optimization of daily functioning, family cohesion and prevention of psychiatric pathology in later adulthood [4, 9].

This chapter provides a brief summary of the extant literature on various important aspects of sleep physiology, aetiology, classification and prevalence of sleep disorders among CYP with NDEBIDs. It outlines various strategies for the management of sleep disorders, including behavioural non-pharmacological strategies and pharmacotherapy. Practical tips for clinicians managing CYP with co-morbid NDEBID and sleep disorders are outlined in an easy-to read flow chart, including sections on assessment, investigations, care plan formulation and follow-up.

2. What are neurodevelopmental (and related neurodisability), emotional, behavioural, intellectual and disorders (NDEBID)?

NDEBID is the umbrella terminology used in this chapter to refer to common childhood developmental disorders including several related conditions such as Attention Deficit/Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), Cerebral palsy (CP), Epilepsy and Learning (Intellectual) disorders. Childhood NDEBID such as ADHD, tic disorder/Tourettes syndrome, developmental delay, development coordination disorder.

These conditions constitute a group of congenital or acquired long-term conditions that are attributed to disturbance of the brain and or neuromuscular system and create functional limitations in sensory, motor, speech, language, cognition or behaviour [10, 11]. They often co-occur together and co-morbidities are the rule rather than exceptions. Prevalence of up to 15% for NDEBID have been reported in developed countries, based on varying methodologies and definitions [12, 13]. They are best managed by specialist Paediatricians or Psychiatrists working within integrated teams involving other allied healthcare professionals, education, social care and voluntary sectors [14, 15, 16].

3. Sleep physiology in NDEBID

3.1 Definition and normal physiology

Sleep is a reversible state of reduced awareness of and responsiveness to the environment. There are two main phases of sleep: Rapid Eye Movement (REM) and Non-REM [17]. Rapid eye movement (REM) sleep is prominent in early infancy, possibly explaining in part why sleep seems to be fragile at this age. Deep NREM sleep is particularly prominent in early childhood, and this is one of the reasons why arousal disorders (such as sleep walking) occur mainly at this stage [18].

3.2 What are the benefits and ideal sleep duration for children and adolescents?

Sleep is essential for optimal growth, emotional and cognitive development CYP. A group of experts from the American Academy of Sleep Medicine and the National Sleep Foundation have published recommendations for the sleep duration required by different age groups of CYP to refresh and rejuvenate the body and mind (Table 1).

Age of the child	Recommended	May be appropriate	Not recommended
Newborn 0 to 3 months	14 to 17 h	11–19 h	including daytime naps
Infants* 4 to 12 months	12 to 16 h	10–18 h	including daytime naps
Children 1 to 2 years	11 to 14 h	9–16 h	including daytime naps
Pre-schoolers (3–5 yr)	10–13 h	8–14 h	Less than 8 h or more than 14 h
School-aged children (6–12 yr)	9–12 h	7–13 h	Less than 7 h or more than 12 h
Teenagers (13–18 yr)	8–10 h	7–11 h	Less than 7 h or more than 11 h

Table 1.

Recommended sleep duration for each age group.

Chronic sleep deprivation is associated with attention, behaviour, and learning problems, increased risk of accidents, injuries, hypertension, obesity, diabetes, and depression, as well increased risk of self-harm, suicidal thoughts, and suicide attempts among teenagers [19]. CYP and their carers require regular encouragement and emphasis about the benefits of adequate sleep, including improved attention, behaviour, learning, memory, emotional regulation, quality of life, mental and physical health (Table 2). Parents can help their children by monitoring their sleep pattern and encouraging them to see professionals for help.

Positive effects of adequate and good quality sleep	Negative consequences of lack of adequate and good quality sleep
Promotes growth Strengthens immunity Helps cell growth and body repair Consolidates memory (https://www.sleepscotland.org/support/gateway-to-good-sleep/whyis-sleep-important/). Promotes learning and cognitive development. Maintains physical health and emotional wellbeing	Increased association with excess weight gain and obesity. Impairs immune function. Affects physical coordination. Affects ability to learn new information and problem solve. Affects mood and emotional regulation and increases risk of mental health problems e.g., mood or anxiety disorder, suicidal ideation

Table 2.

Benefits of adequate sleep and negative consequences of inadequate sleep.

3.3 Aetiology and pathogenesis of sleep disorders in NDEBID

The aetiology of sleep disorders in children with NDEBID is multifactorial and could also be disease specific. These include are biologic, behavioural (including environmental) and psycho-medical factors [20]. There is limited high-quality data and clinical guidelines to help offer a consistent approach to diagnosis and management of sleep disorders among CYP with NDEBID and co-morbid sleep problems [21]. Table 3 shows common causes and examples of sleep disorders.

	Toddler/preschool (2–5 years)	School-aged (6–12 years)	Adolescent (13–1 8 years)
1. Bedtime	Does your child have any problems going to bed? Falling asleep	Does your child have any problems at bedtime? (P) Do you have any problems? (C)	Do you have any problems falling asleep at bedtime? (C)
2. Excessive daytime sleepiness	Does your child seem overtired or sleep a lot during the day? Does she still take naps?	Does your child have difficulty waking in the morning, seem sleepy during the day or take naps? (P) Do you feel tired a lot? (C)	Do you feel sleepy a lot during the day? In school? While driving? (C)
3. Awakenings during the night	Does your child wake up a lot at night?	Does your child seem to wake up a lot at night? Any sleepwalking or nightmares? (P) Do you wake up a lot at night? Have trouble getting back to sleep? (C)	Do you wake up a lot at night? Have trouble getting back to sleep? (C)
4. Regularity and duration of sleep	Does your child have a regular bedtime and wake time? What are they?	What time does your child go to bed and get up on school days? Weekends? Do you think he/she is getting enough sleep (P)	What time do you usually go to bed on school nights? Weekends? How much sleep do you usually get? (C)
5. Snoring	Does your child snore a lot or have difficulty breathing at night?	Does your child have loud or nightly snoring or any breathing difficulties	Does your teenager snore loudly or nightly? (P)

Table 3.

Outline of ‘BEARS’* screening questions.

*

[B = bedtime problems; E = excessive daytime sleepiness; A = awakenings during the night; R = regularity and duration of sleep; S = Snoring].

(P) Parent-directed question (C) Child-directed question. Source: Mindell JA, Owens JA. A Clinical Guide to Paediatric Sleep (Diagnosis and Management of Sleep Problems), Lippincott Williams & Wilkins 2003.

The most common sleep disorders among CYP include chronic sleep deprivation, delayed sleep phase disorder (especially among teenagers), difficulty falling asleep or maintaining sleep, and early morning [9, 22].

3.4 Classification of sleep disorders

Several terminologies and sometimes conflicting definitions of sleep disorders have been published, in terms of age, frequency, severity, and duration of symptoms. We refer to the definitions in both the 5th edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5) [18] and the 3rd edition of the International Classification of Sleep disorders (ICSD-3) [23] as reference standards in this chapter. Paediatric insomnia has been defined as “repeated difficulty with sleep initiation, duration, consolidation, or quality that occurs despite age-appropriate time and opportunity for sleep and results in daytime functional impairment for the child and/or family” [6]. Table 4 refers to a slightly modified ICSD-3 classification of sleep disorders.

Category	Description	Conditions and causes, some examples
Insomnias	Inability to fall asleep or stay asleep	Environmental: Poor sleep hygiene, bedroom noise, bright light.; Behavioural insomnia of childhood (sleep onset/limit setting/combined).; Psychiatric, trauma and substance misuse: Anxiety, depression, OCD, PTSD, abuse or neglect, bullying, drug and substance misuse.; Medical: Pain (headaches, ear ot toothaches, joint pains), lung problems (asthma, cystic fibrosis), skin (eczema, allergies), gastric reflux, neuromuscular, obesity, medication side effects.
Sleep related breathing disorders	Breathing difficulties during sleep	Obstructive sleep apnoea (including obesity, tonsil hypertrophy, facial dysmorphism, nasal septal deviation, craniofacial abnormalities, hypotonia, chronic rhinitis); Central sleep apnoea
Central disorders of hypersomnolence	Excessively sleepy	Narcolepsy
Circadian rhythm; sleep–wake disorders	Sleep times are out of alignment	Delayed sleep phase syndrome; Jet lag
Parasomnias	Unwanted events or; experiences that occur at; the time of falling asleep,; sleeping or waking up	During NREM sleep: Confusional arousals, Sleep terrors, Sleepwalking; During REM sleep: Nightmares; Others: Enuresis or constipation
Sleep related; movement disorders	Unusual body movements during sleep	Bruxism; Restless legs syndrome; Periodic limb movement disorder; Rhythmic movement disorder (head banging, body rocking)

Table 4.

ICSD-3 classification of common sleep disorders.

3.5 Prevalence of sleep disorders in NDEBID

The commonest NDEBID mostly associated with sleep disorders include Autism spectrum disorder (ASD), Attention deficit hyperactivity disorder (ADHD) and Learning disabilities. Sleep disturbance is reported to be the second most common co-morbidity in children with ASD, with estimated prevalence between 33 and 81% [22, 24]. They often experience coexisting emotional problems such as anxiety or depression and epilepsy [25, 26, 27].

Common effects of sleep disturbances in CYP with ASD include increased severity of autism symptoms, challenging daytime behaviour such as physical aggression, emotional disturbances such as irritability, inattention, and hyperactivity [24, 28]. Several factors that may account for sleep disturbances associated with autism include alterations in neurotransmitter release, such as serotonin and melatonin, impaired sensory sensitization, behavioural insomnia syndromes, delayed sleep phase syndrome, abnormal rapid eye movement sleep, decreased time in bed, increased proportion of stage 1 sleep [25, 26].

Up to 70% of CYP with ADHD also have significant sleep problems including behavioural insomnia (limit-setting disorder), bedtime resistance, latency of sleep onset, dim light melatonin onset delay, decreased duration of sleep, increased number of overnight awakenings, and daytime somnolence sleep-disordered breathing, and restless legs syndrome/periodic limb movement disorder [29]. Their sleep disturbances may also be due to side-effects of ADHD medications [30]. Sleep problems among ADHD CYP can be transient and variable over time in up to 60% but can be more persistent in another 10% of the population [31]. Sleep problems can present with increasing severity of ADHD symptoms, poorer child quality of life (QoL), daily functioning and caregiver mental health, poor school performance and attendance [32]. It is important to emphasise that sleep disorders are identified before diagnosing ADHD, since disordered sleep can manifest with symptoms that mimic ADHD such as inattention, problematic behaviour, and poor emotional regulation [30].

4. Management of sleep disorders in CYP with NDEBID

4.1 Published clinical guidelines

There is limited global evidence-based clinical guidelines available to practitioners managing CYP with NDEBID [21]. Some professional bodies have produced multidisciplinary national consensus statements for the use of their members [7]. The American Academy of Neurology has also recently published treatment guidelines specifically addressing individuals with autism spectrum disorder [33]. The authors have published a proposed evidence-based flow chart practice guidance for managing sleep problems among CYP with NDEBID [34].

4.2 Clinical assessment

Clinical assessment with detailed medical, social, family, academic and lifestyle history including sleeping pattern and physical examinations during routine health encounters with CYP by all health practitioners should be undertaken as a standard procedure due to high prevalence of sleep problems in this population, especially among those with any NDEBID conditions [35, 36]. The diagnosis of sleep disorders in CYP is essentially clinical and should include information provided by the parents/caregivers and the older children and young people [7].

Sleep history should include the sleep/wake schedule, sleeping environment and bedtime routines, abnormal movements or behaviour during sleep, and lifestyle effects of sleep deprivation, daytime sleepiness, sleep onset latency and nighttime interruptions (Box 1) [2, 37].

Bedtime routines, nature of sleep environment, bedroom sharing and exposure to electronic gadgets Sleeping pattern including onset latency, nighttime awakening, abnormal movements or behaviour, night terrors and other parasomnias Levels of activity and exercise during the day Other physical, emotional or neurodevelopmental comorbidities including ADHD Physical illness or discomfort (for example, reflux, ear or toothache, bedwetting, constipation or eczema) Effects of any medications used and emotional state Any other factors affecting sleep, such as emotional relationships, challenging behaviours, school problems Impact of the sleep problems on parents or carers, other family members, school performances and other social functioning Family sleep patterns, parental expectations and cultural factors Clinical examination to exclude enlarged tonsils, facial dysmorphism, neurocutaneous markers etc.

Box 1.

Components of detailed sleep assessment history.

Validated sleep questionnaires such as BEARS screening Assessment (see Table 3) and Children’s Sleep Habit Questionnaire (CSHQ) are useful adjuncts to clinical assessment. The goal of detailed clinical assessment should be identification of a specified sleep disorder or of potential differential medical or anatomical diagnosis (Table 4). Detailed history about current medical conditions and medications should be recorded to determine possible effects on the sleep cycle (Table 5). Some co-existing medical conditions that may disturb sleep include Asthma, Eczema, Gastroesophageal reflux, Epilepsy, Chronic pain and Rheumatological conditions, and emotional problems like Anxiety, Depression and Mood disorders.

Sleep-disturbance	Sleep-promoting
Cholinergics .g. Methacholine, Carbachol, Pilocarpine and Pyridostigmine	Anticholinergics e.g. Dicyclomine, Ipratropium, Hyoscine, Glycopyrrolate and Trihexyphenidyl
Dopamine agonists e.g. pergolide and bromocriptine	Dopamine antagonists e.g. Metoclopramide, Haloperidol, Melatonin and Risperidone
Serotonin agonists e.g. Sumatriptan, Fluoxetine and Fenfluramine	Serotonin Antagonists e.g. Cyproheptadine, Pizotifen and Mirtazapine
Histamine agonists e.g. Methylhistamine, Cipralisant	Antihistamines e.g. Chlorphenamine, Ranitidine, Cetrizine, Pizotifen and Olanzapine
Adenosine antagonist e.g. Caffeine	GABA agonists e.g. Baclofen and Benzodiazepines

Table 5.

Some medications that can influence the sleep cycle.

It should be noted that rare conditions like Narcolepsy and nocturnal Epilepsy are more commonly experienced co-morbidities among CYP with NDEBID [38].

4.3 Investigations

Baseline investigations required for formulation of a management plan include a 2-week sleep diary and actigraphy [9]. Actigraphy is a technical device used for monitoring body motion, sleep and wake patterns in individuals, that can be carried out in their home environment. It can measure sleep parameters such as total sleep time (TST), sleep efficiency, wake after sleep onset, and sleep onset latency (SOL), help to determine sleep patterns and document response to treatment in the patient’s normal sleep [7].

Polysomnography (PSG) is a more comprehensive sleep study involving recording of sleep and other related physiological parameters from multiple electronic sensors, often combined with video recordings, carried out in specialist centres. PSG is particularly useful for diagnosis of sleep-related breathing disorder, atypical parasomnia, Periodic Limb movement disorder (PLMD), clinically unconfirmed Restless leg syndrome (RLS) or nocturnal seizures [39].

4.4 Common differential diagnosis and treatments

Detailed assessment should lead to formulation of a sleep disorder diagnosis or consideration of potential differential diagnosis including as follows:

4.4.1 RLS and PLMD

Common causes of childhood onset RLS include familial predisposition and systemic iron deficiency. Treatment options include iron supplementation and Gabapentin (researched mainly in adults). PLMD is a sleep disorder that is characterised by periodic and repetitive movements of legs and less often arms during sleep. Restless sleep disorder in childhood is a recently proposed entity, characterised by night-time restlessness, daytime sleepiness, and often iron deficiency, despite not meeting the diagnostic criteria for RLS or PLMD [17]. There is inconclusive research evidence for use of iron therapy, Dopamine agonists and anticonvulsants for RLS and PLMD in children [36].

4.4.2 Parasomnias

Parasomnias are undesirable physical activities predominantly associated with sleep. They are classified according to the dominant sleep phase during which they occur: rapid Eye Movement (REM), Non-REM and Non-specific. REM parasomnias include sleep paralysis, hallucinations and REM behaviour disorder. Non-REM parasomnias include confusional arousals (often triggered by sleep apnoea, RLS, or acid reflux), sleep walk and night terrors. Parasomnias often respond to reassurance and safety measures, with use of pharmacotherapy with benzodiazepines reserved for severe, potentially dangerous cases, and administered by sleep specialists [40].

4.4.3 Obstructive sleep apnoea

Obstructive sleep apnoea (OSA) is often caused by physical phenomenon such as adeno-tonsillar hypertrophy, cranio-facial anomalies, and obesity. The prevalence among CYP is estimated to be 2 percent and it is a common indication for urgent of children referral to the ENT surgeons [41].

4.4.4 Delayed sleep phase syndrome (DSPS)

Delayed Sleep Phase Syndrome (DSPS) is commonly diagnosed among male adolescents and associated with normal sleep pattern which is delayed by more than 2 hours relative to socially acceptable conventional sleep times. It can be treated with chronotherapy, light therapy and potentially melatonin as long as the patient is motivated [42].

5. Comprehensive management of sleep disorders among CYP with NDEBID

A comprehensive clinical assessment should lead to the formulation of a sleep plan with graduated behavioural and pharmacological therapy and specialist referrals where indicated. The plan needs to be reviewed at regular intervals until a desirable sleep pattern has been achieved. A flow chart of recommended practice guidance is outlined in Figure 1.

Figure 1.

Recommended flow chart for sleep management guidance based on the published evidence.

5.1 Non-pharmacological/behavioural strategies

There is ample published evidence to recommend behavioural interventions as the first line treatment of sleep disorders, including practice of sleep hygiene, parent and care-giver education and training and behavioural interventions alternative therapies (such as massage therapy, aromatherapy, nutrients and multivitamin or iron supplementation) and Cognitive Behaviour Therapy (CBT) for older children and adolescents [9, 21, 26, 43].

5.1.1 Behavioural strategies

There is sufficient evidence to support the short- to medium-term effectiveness of cognitive-behavioural strategies based on learning principles, for the management of paediatric insomnia [7, 44]. The most popular behavioural interventions are different types of extinction: either complete (total removal of reinforcement to reduce a behaviour) or various degrees of graduated measures (including bedtime fading/positive routines and stimulus control techniques) and scheduled awakenings). The definitions and practical tips of cognitive behaviour strategies are listed in the Table 6.

Bedtime settling problems				Night-time waking		DSPS
Extinction (Crying out)	Graduated extinction (Controlled crying)	Bedtime fading	Graded withdrawal	Robotic parent return	Scheduled awakening	Chronotherapy
Parents need to ignore the child’s crying for the child to self-soothe	This helps to take the ‘flight’ out of bedtime	Modified as some parents find this strategy less stressful.	Parent gradually withdraws from the child’s bedroom to enable the child to fall asleep independently.	Parents need to avoid communication and interaction with the child when he/she wakes up at night, crying out loudly or calling out	This helps if the child wakes up frequently at the same time each night and cannot settle to sleep	This helps to reset the biological clock
Keep the regular bedtime; Completely Ignore the child’s cries and calls	Keep the regular bedtime; Ignore the; child’s cries and calls for specific periods e.g., 3 minutes	Keep a sleep diary for 2 weeks to choose the new bedtime; Initially the child needs to stay up later, until their natural sleep time; Gradually move the bedtime earlier; Success within a few; weeks	The child relies; on the presence of parent to sleep; No change to bedtime needed; Withdraw from the child’s bedroom gradually; Use with ‘Robotic parent return’ strategy; Success usually within 2 weeks	Do not carry or cuddle the child.; There should be no eye contact; Use magic phrase such as ‘Time for sleep’ but no other verbal communication; The child learns bedtime means sleep; Reward the child for better night’s sleep and have lots of interaction with the child during daytime	Wake the child 15 to 30 minutes before the usual wake time; Use with ‘Robotic parent return’ strategy; Success within 2 weeks	Keep a sleep diary for 2 weeks to find out the bedtime and wake-up; time; The adolescent needs to stay up 3 hours later and get up 3 hours later than the established sleep/wake schedule; Avoid naps

Table 6.

Behavioural interventions to improve sleep in children with chronic insomnia.

Source: “Sleep problems in children and young people: A simple teaching aid”, a flip chart written by Dr. CR Yemula, Andrea Roberts and edited by professor Besag).

5.1.2 Parent-training and psychoeducation

Psychoeducation is the process of empowering CYP and their carers by providing them with practical information regarding their sleep problems, with a systematic, structured and didactic approach [45, 46]. This enhanced understanding of their condition enables them to implement self-management strategies and effective partnership with professionals and improved compliance with prescribed treatment, resulting in more desirable outcomes. Table 7 presents a list of some useful resources for parents and young people with sleep problems.

Users	Resources	Free access	Website links
Parents and carers	CEREBRA-Sleep Advice service	Yes	https://cerebra.org.uk/get-advice-support/sleep-advice-service/
	Sleep for better day ahead leaflet	Yes	https://www.qvh.nhs.uk/wp-content/uploads/2020/08/Sleep-for-a-better-day-ahead- 0127.pdf
	Sleep hygiene in children and young people: Information for families-leaflet	Yes	https://media.gosh.nhs.uk/documents/Sleep_hygiene_F1851_FINAL_Jun20.pdf
	Encouraging good sleep habits in children with learning disabilities-leaflet	Yes	https://www.oxfordhealth.nhs.uk/wp-content/uploads/2014/05/Good-sleep-habits-forchildren-with-Learning-Difficulties.pdf
	Sleep problems and sleep disorders in school aged children	Yes	https://www.sleephealthfoundation.org.au/sleep-problemsand-sleep-disorders-inschool-aged-children.html
	Further useful facts sheets and resources-website	Yes	https://www.sleephealthfoundation.org.au/fact-sheets.html
	Other websites	Yes	https://www.nhs.uk/live-well/sleep-and-tiredness/healthy-sleep-tips-for-children/; https://www.sleepscotland.org/
Adolescents	How to sleep well and stay healthy-A guide for teenagers. This is an interactive apple book with animations, sounds and external links to useful educational video clips	Yes	https://books.apple.com/gb/book/how-to-sleep-well-and-stay-healthy-a-guide-forteenagers/id1397176909; It is available for iPad, iPhone and MAC book.
	How to sleep well -Teen sleep guide; This is an interactive pdf guide	Yes	https://www.cambscommunityservices.nhs.uk/docs/default-source/bedfordshire-childrens-services/beds---books/teen-sleep-guide-14-sep-2022.pdf?sfvrsn=2
	Sleep tips for teenagers	Yes	https://www.nhs.uk/live-well/sleep-and-tiredness/sleep-tips-for-teenagers/
Children	Sleep poster: Interactive pdf for; children and parents/carers	Yes	https://www.cambscommunityservices.nhs.uk/docs/default-source/Luton---NDDWebpages/Sleep/sleep-poster76ddec06f4f66239b188ff0000d24525.pdf?sfvrsn = 2
	I see the animals sleeping: A bedtime story-an app	Free on Google; play, App store and; Kindle store	http://school.sleepeducation.com/childrensapps.aspx
	The animal sleep: A bedtime book for biomes-an app		http://school.sleepeducation.com/childrensapps.aspx; https://www.youtube.com/watch?v=zLQ3bkn8Gu8

Table 7.

Some useful resources for parents and adolescents.

5.1.3 Good sleep hygiene

“Sleep hygiene” refers to healthy sleep habits and practical strategies that promote optimal sleeping patterns. They typically involve modifiable daytime, bedtime, and night-time practices such as diet, exercises and sleeping environment, with insufficient evidence to be recommended as stand-alone therapy [9, 37, 47]. Practical examples include use of reward charts, objects of reference such as applying parents pyjamas or perfume on teddy bear, pink or white noise (or music), night or daytime indicators such as Glo-clock or side lamps (Box 1).

5.1.4 Cognitive behaviour therapy (CBT)

CBT is a common psychological treatment that helps to modify negative thoughts and behaviours through structured conversation between the professional and the patient. There is scientific evidence that supports cognitive-behavioural treatment as the most effective intervention in the management of sleep disorders, especially for older adolescents and young people [7, 48].

5.1.5 Neurofeedback

Sensori-Motor Rhythm (SMR) and Slow-Cortical Potential (SCP) neurofeedback have been identified to produce some beneficial effects in improving sleep onset latency, especially among CYP with ADHD [49].

5.2 Pharmacological treatment

Pharmacotherapy is often considered as second line treatment after cognitive-behavioural strategies alone have not been effective.

5.2.1 Melatonin

Melatonin is a natural hormone produced by the pineal gland in the brain. It controls the body’s circadian cycles which corresponds to the ambient 24 hour light–dark period, for such as sleep/wake rhythms, blood pressure, body temperature and metabolism [50]. The main effects of administered Melatonin include chronobiology (circadian phase-shifting) and hypnosis (sleep-promotion). Melatonin also has some immune modulating properties and should be avoided in individuals with compromised immune functioning [51].

There is ample published evidence to support the use of melatonin in treating CYP with NDEBID. The reported benefits of moderate doses of melatonin (up to 6 mg) include reduced sleep onset latency and number of awakenings/night, and increase in total hours of sleep/night [52, 53, 54], but it has no significant benefit in reducing the number of awakenings per night [54], and has limited effect on Child behaviour and family functioning [55]. Melatonin is more likely going to be effective for children who are sleeping less than 6 hours at night [56]. However, there is a paucity of evidence on managing sleep disturbances in CYP with NDEBID specifically [57].

Most slow-release melatonin formulations (mainly Circadin) are licenced for adults with primary insomnia, but are widely used “off-label” to treat sleep disorders among CYP of all ages [58]. The European Medicines Agency has recently licenced a melatonin brand (Slenyto) for CYP with Autism and Smith Magenis syndrome [59]. The U.S. Food and Drug Administration recognises Melatonin as a supplement which therefore does has not require its approval. Melatonin is generally considered to be safe for short-term management of sleep disorders among CYP, but its long-term safety have not been extensively studied [60]. CYP on melatonin require regular re-evaluation to ensure the treatment is terminated as soon as it is no longer required [50].

The effectiveness of melatonin can often diminish overt time, due to decreased the CYP1A2 liver enzyme activity, either genetically determined or due to the effect of other medications [61]. In patients with loss of response to melatonin, a period of melatonin clearance for up to 3 weeks and a considerable dose reduction has been advised [20].

5.2.2 Antihistamines (alimemazine, promethazine, diphenhydramine, hydroxyzine)

Antihistamines constitute the most popular prescribed agents for managing sleep problems among CYP with sleep problems, despite limited research evidence to support their efficacy. Clinicians should be aware that some sedative antihistamines, such as hydroxyzine or diphenhydramine can present with paradoxical agitations in children, and their effects on sleep latency duration is very minimal [54].

5.2.3 Alpha 2 adrenergic agonists (clonidine and Guanfacine)

Clonidine and Guanfacine are examples of alpha-2-adrenergic receptor agonist, whose mechanism of action for sedation remains elusive. They are commonly prescribed for CYP with co-morbid ADHD and associated sleep disorders, but the research evidence to support their effectiveness is very scanty [49, 62]. In a USA National survey, alpha agonists were the most commonly prescribed insomnia medication for children with ADHD (81%) [63].

5.2.4 Z-drugs (zopiclone, eszopiclone, zaleplon and zolpidem)

Z-drugs are approved and commonly prescribed for transient sleep disorders in adults. Only few studies have been carried out regarding effectiveness among CYP, with contrasting results, and report of increased adverse effects compared to melatonin [37, 55].

5.2.5 Benzodiazepines (like clonazepam and Flurazepam)

Benzodiazepines are sedative medications which are not routinely recommended for treatment of sleep disorders in children, except for limited periods to alleviate co-morbid daytime anxiety [37]. Clonazepam has been advocated for treatment of severe parasomnia/night terrors under specialist supervision [47].

5.2.6 Selective serotonin reuptake inhibitors (SSRIs) and tricyclic antidepressants

Use of selective serotonin reuptake inhibitors (SSRIs) such as Sertraline may be considered for disabling bedtime anxiety. Tricyclic antidepressants, used in adults with insomnia, are not approved for CYP due to their poor safety profile [47]. While Trazodone and mirtazapine have potential benefits, they require further evidence for routine prescription for children with NDEBID [37]. Trazodone may be effective in managing sleep disorders among children with Angelman syndrome with specialist advice from a tertiary sleep centre [47].

6. Alternative therapies

There is a plethora of herbal and other over-the-counter formulations that have traditional been used for self-management of sleep disturbances, based on anecdotal assumptions. These include Valerian, Lavender, Chamomile and Kava products [7].

7. Combined treatment modalities

Only limited studies have assessed the efficacy combining behavioural and pharmacological therapies. The combination of controlled-release melatonin over 12 weeks and four sessions of cognitive-behavioural therapy among a group of ASD Children aged 4–10 years, showed a trend to outperform other active treatment groups, with fewer dropouts and a greater proportion of treatment responders achieving clinically significant changes [64].

A similar small Canadian study among 27 ADHD children reported the effect size of the combined sleep hygiene and melatonin intervention from baseline to 90 days’ posttrial was 1.7, compared to 0.6 on average for either sleep hygiene or melatonin alone. However, the decreased sleep latency and improved sleep had no demonstrable effect on ADHD symptoms [65].

8. Referrals to relevant specialist

Considering the limited resources and varied expertise in clinical practice, it is important for clinicians to have a low threshold to make an onward referral whenever a significant sleep disorder is suspected. The referral pathways/practice policies need to be agreed locally among all the major Clinicians and stakeholders [39].

Sleep disorders that often require further evaluation by a specialist include suspected OSA, PLMD, debilitating parasomnias and narcolepsy. Referrals should be made to a relevant specialist such as an ENT surgeon (in case of suspected OSA) or a Respiratory physician/sleep centre for suspected severe parasomnias, PLMD or narcolepsy [17].

9. Conclusion

Children and young people with neurodevelopmental disorders experience higher prevalence of sleep difficulties and sleep disorders compared to the general population. In addition to other associated comorbidity, this can negatively affect their cognitive development, behaviour, physical and mental health. There is also significant negative impact on their peer- and family-relationships.

In view of the high prevalence of associated sleep problems, clinicians should screen for sleep disorders when assessing all children and adolescents with cognitive, behavioural, and emotional problems. It is important to undertake a comprehensive evaluation, including use of clinical tools such as BEARS questionnaire, Child Sleep Habit Questionnaire, a 2-week sleep diary, actigraphy and relevant physical examination, in order to identify the sleep pattern and diagnose and any underlying potential sleep disorders.

Due to the complex nature of underlying comorbidity, social, cognitive and psychological difficulties, it is often a frustrating journey for parents/carers to achieve a good quality of sleep for CYP with NDEBID. Initial steps in management involve providing parents/carers and CYP with user-friendly psychoeducation and sleep hygiene measures, taking into account the individual and family circumstances. Specific behavioural interventions where appropriate can be implemented as first line management for sleep disorders.

In CYP with NDEBID and insomnia, use of melatonin should be carefully considered only following an unsuccessful trial of sleep hygiene and behavioural measures, while persevering with the appropriate sleep hygiene measures. Referrals should be made to relevant specialist/sleep centre for further assessment and management of severe sleep disorders, including OSA, PLMD and narcolepsy.

Conflict of interest

The authors declare no conflict of interest.

Abbreviations

ADHD	Attention Deficit/Hyperactivity Disorder
ASD	Autism Spectrum Disorder
CP	Cerebral palsy
Epilepsy and ID	Intellectual (Learning) disorders
NDD	Neurodevelopmental disorders
NDEBID	Neurodevelopmental (and related Neurodisability), Emotional, Behavioural, Intellectual and Disorders
CYP	Children and Young people
SOL	sleep-onset latency
SOI	sleep-onset insomnia
TST	total sleep time.