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Article ; Online: Cannabidiol and refractory epilepsy: parental and caregiver perspectives of participation in a compassionate access scheme.

Harte, S / Singh, Y / Malone, S / Heussler, H / Wallace, G

2022 Volume 22, Issue 1, Page(s) 173

Abstract: Background: The Compassionate Access Scheme (CAS) being delivered through the Queensland Children's Hospital is designed to allow access to an investigational purified Cannabidiol oral solution to paediatric patients with severe refractory epilepsy. The ...

Abstract	Background: The Compassionate Access Scheme (CAS) being delivered through the Queensland Children's Hospital is designed to allow access to an investigational purified Cannabidiol oral solution to paediatric patients with severe refractory epilepsy. The objectives of this study were to conduct semi-structured interviews to: 1. Understand families' expectations and attitudes about the use of an investigational cannabinoid product for their child's seizures; 2. Understand families' perceptions of Cannabidiol's efficacy for their child's seizures; and other aspects of their child's behaviour, quality of life and/or cognition. Methods: Children aged 2-18 years had been enrolled in, or were enrolled in a compassionate access scheme for Cannabidiol at the time of the study. Semi-structured interviews (n = 19) with parents or caregivers (n = 23) of children diagnosed with refractory epilepsy were voice-recorded, transcribed and analysed to generate common themes. Results: Key themes emerged relating to seizure activity, family and school engagement, drug safety and legal access, efficacy, clinical support, social acceptance of the medication and program delivery. The use of Cannabidiol was perceived to have benefits in relation to reducing the severity and frequency of seizure activity for almost a third of patients experiencing refractory epilepsy. Participants described other benefits including improved social engagement, wakefulness and a reduction of side effects related to a reduction of conventional medication dosage. Conclusion: This study provided unique perspectives of families' experiences managing untreatable epilepsy, their experiences with conventional and experimental pharmacological treatments and health services. Whilst families' perceptions showed the use of Cannabidiol did not provide a therapeutic reduction in the seizure activity for all patients diagnosed with refractory epilepsy, it's use as an additional pharmacological agent was perceived to provide other benefits by some patient families.
MeSH term(s)	Adolescent ; Anticonvulsants/therapeutic use ; Cannabidiol/therapeutic use ; Caregivers ; Child ; Child, Preschool ; Drug Resistant Epilepsy/drug therapy ; Humans ; Parents ; Quality of Life
Chemical Substances	Anticonvulsants ; Cannabidiol (19GBJ60SN5)
Language	English
Publishing date	2022-02-10
Publishing country	England
Document type	Journal Article
ZDB-ID	2050434-2
ISSN	1472-6963 ; 1472-6963
ISSN (online)	1472-6963
ISSN	1472-6963
DOI	10.1186/s12913-022-07592-4
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Article ; Online: New approaches to the study of behavioural phenotypes.

Naerland, T / Nag, H E / Dønnum, M S / Høyland, A L / Heussler, H S

Journal of intellectual disability research : JIDR

2022 Volume 66, Issue 8-9, Page(s) 667–668

MeSH term(s)	Humans ; Phenotype
Language	English
Publishing date	2022-07-02
Publishing country	England
Document type	Editorial
ZDB-ID	1103832-9
ISSN	1365-2788 ; 0964-2633
ISSN (online)	1365-2788
ISSN	0964-2633
DOI	10.1111/jir.12961
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Article ; Online: Longitudinal change in sleep, functional, and behavioural characteristics in a cohort of children with Down syndrome.

Chawla, Jasneek K / Bernard, Anne / Staton, Sally / Burgess, Scott / Heussler, Helen

Journal of sleep research

2023 , Page(s) e14093

Abstract: ... Questionnaire-Abbreviated (CSHQ-A), Life-Habits Questionnaire (Life-H) and Child Behaviour Checklist (CBCL ... assessment point. The median total Life-H and total CBCL scores were not significantly different between ...

Abstract	This paper describes the longitudinal change in sleep, functional, and behavioural characteristics in a cohort of children with Down syndrome, including the effect of sleep interventions in a subset. A prospective longitudinal cohort study was undertaken in children with Down syndrome aged 3-16 years comparing (1) children referred to a tertiary sleep medicine clinic who received sleep hygiene advice and an additional sleep treatment (DSref_I) with (2) children attending the same clinic who only received sleep hygiene advice (DSref_N) and (3) children recruited from the community who, were not receiving any treatment (DScomm). Data collected included demographic and medical history information, Child Sleep Habits Questionnaire-Abbreviated (CSHQ-A), Life-Habits Questionnaire (Life-H) and Child Behaviour Checklist (CBCL) at baseline and then 6-monthly for a total of 18 months. Any sleep interventions during this time were recorded. A total of 57 children were included (DSref_I, n = 16; DSref_N, n = 25; DScomm, n = 16). At recruitment, the median CSHQ-A total score was high (>41) in all three subgroups, but highest in the DSref_I subgroup (median [interquartile range] Dsref_I score 58 [53-66] versus DSref_N score 49 [43-53], p = 0.019). Although improved, 80% of participants in the DSref_I subgroup still had a CSHQ-A total score >41 at the last assessment point. The median total Life-H and total CBCL scores were not significantly different between groups at baseline and there was no significant time, group, or interaction effect seen through the study. Over an 18-month period, sleep problems were seen to persist in children with Down syndrome. Treatment resulted in only modest improvements in sleep.
Language	English
Publishing date	2023-11-14
Publishing country	England
Document type	Journal Article
ZDB-ID	1122722-9
ISSN	1365-2869 ; 0962-1105
ISSN (online)	1365-2869
ISSN	0962-1105
DOI	10.1111/jsr.14093
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Article ; Online: Understanding the Perspective of Youths on Undergoing Metabolic Monitoring While on Second-Generation Antipsychotics: Challenges, Insight, and Implications.

Aouira, Nisreen / Khan, Sohil / Heussler, Helen / Haywood, Alison / Karaksha, Abdullah / Bor, William

Journal of child and adolescent psychopharmacology

2023 Volume 33, Issue 7, Page(s) 279–286

Abstract: Introduction: ...

Abstract	Introduction:
MeSH term(s)	Adult ; Child ; Humans ; Adolescent ; Antipsychotic Agents/adverse effects ; Weight Gain ; Metabolic Syndrome/chemically induced ; Metabolic Syndrome/drug therapy
Chemical Substances	Antipsychotic Agents
Language	English
Publishing date	2023-07-27
Publishing country	United States
Document type	Journal Article
ZDB-ID	1055410-5
ISSN	1557-8992 ; 1044-5463
ISSN (online)	1557-8992
ISSN	1044-5463
DOI	10.1089/cap.2023.0016
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Article ; Online: Cannabidiol and refractory epilepsy

S. Harte / Y. Singh / S. Malone / H. Heussler / G. Wallace

BMC Health Services Research, Vol 22, Iss 1, Pp 1-

parental and caregiver perspectives of participation in a compassionate access scheme

2022 Volume 10

Abstract: ... Children’s Hospital is designed to allow access to an investigational purified Cannabidiol oral solution ... of an investigational cannabinoid product for their child’s seizures; 2. Understand families’ perceptions of Cannabidiol ... s efficacy for their child’s seizures; and other aspects of their child’s behaviour, quality of life ...

Abstract	Abstract Background The Compassionate Access Scheme (CAS) being delivered through the Queensland Children’s Hospital is designed to allow access to an investigational purified Cannabidiol oral solution to paediatric patients with severe refractory epilepsy. The objectives of this study were to conduct semi-structured interviews to: 1. Understand families’ expectations and attitudes about the use of an investigational cannabinoid product for their child’s seizures; 2. Understand families’ perceptions of Cannabidiol’s efficacy for their child’s seizures; and other aspects of their child’s behaviour, quality of life and/or cognition. Methods Children aged 2-18 years had been enrolled in, or were enrolled in a compassionate access scheme for Cannabidiol at the time of the study. Semi-structured interviews (n = 19) with parents or caregivers (n = 23) of children diagnosed with refractory epilepsy were voice-recorded, transcribed and analysed to generate common themes. Results Key themes emerged relating to seizure activity, family and school engagement, drug safety and legal access, efficacy, clinical support, social acceptance of the medication and program delivery. The use of Cannabidiol was perceived to have benefits in relation to reducing the severity and frequency of seizure activity for almost a third of patients experiencing refractory epilepsy. Participants described other benefits including improved social engagement, wakefulness and a reduction of side effects related to a reduction of conventional medication dosage. Conclusion This study provided unique perspectives of families’ experiences managing untreatable epilepsy, their experiences with conventional and experimental pharmacological treatments and health services. Whilst families’ perceptions showed the use of Cannabidiol did not provide a therapeutic reduction in the seizure activity for all patients diagnosed with refractory epilepsy, it’s use as an additional pharmacological agent was perceived to provide other benefits by some patient families.
Keywords	Refractory epilepsy ; Cannabidiol ; Expectations ; Caregiver ; Clinical trial ; Experimental ; Public aspects of medicine ; RA1-1270
Subject code	360
Language	English
Publishing date	2022-02-01T00:00:00Z
Publisher	BMC
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Sleep in children with neurodevelopmental difficulties.

Heussler, Helen S / Hiscock, Harriet

Journal of paediatrics and child health

2018 Volume 54, Issue 10, Page(s) 1142–1147

Abstract: Sleep disorders in children with neurodevelopmental disorders are complex and reflect underlying genetic/biological and behavioural components. The sleep disorders are the same as in the typically developing child, although there may be some ... ...

Abstract	Sleep disorders in children with neurodevelopmental disorders are complex and reflect underlying genetic/biological and behavioural components. The sleep disorders are the same as in the typically developing child, although there may be some modifications to the presentation or the frequency depending on the phenotype. Consideration of the known phenotypes and environmental issues are important in defining management strategies. Despite this complexity, defined behavioural strategies with good sleep hygiene can have a significant effect on the sleep problem and on parental management of the behaviours.
MeSH term(s)	Child ; Child Rearing ; Circadian Rhythm ; Humans ; Neurodevelopmental Disorders/complications ; Sleep Apnea, Obstructive/therapy ; Sleep Wake Disorders/etiology ; Sleep Wake Disorders/therapy
Language	English
Publishing date	2018-10-01
Publishing country	Australia
Document type	Journal Article ; Review
ZDB-ID	1024476-1
ISSN	1440-1754 ; 1034-4810
ISSN (online)	1440-1754
ISSN	1034-4810
DOI	10.1111/jpc.14164
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Article ; Online: Wafer scale manufacturing of high precision micro-optical components through X-ray lithography yielding 1800 Gray Levels in a fingertip sized chip.

Kalaiselvi, S M P / Tang, E X / Moser, H O / Breese, M B H / Turaga, S P / Kasi, H / Heussler, S P

Scientific reports

2022 Volume 12, Issue 1, Page(s) 2730

Abstract: We present a novel x-ray lithography based micromanufacturing methodology that offers scalable manufacturing of high precision optical components. It is accomplished through simultaneous usage of multiple stencil masks made moveable with respect to one ... ...

Abstract	We present a novel x-ray lithography based micromanufacturing methodology that offers scalable manufacturing of high precision optical components. It is accomplished through simultaneous usage of multiple stencil masks made moveable with respect to one another through custom made micromotion stages. The range of spectral flux reaching the sample surface at the LiMiNT micro/nanomanufacturing facility of Singapore Synchrotron Light Source (SSLS) is about 2 keV to 10 keV, offering substantial photon energy to carry out deep x-ray lithography. In this energy range, x-rays penetrate through resist materials with only little scattering. The highly collimated rectangular beam architecture of the x-ray source enables a full 4″ wafer scale fabrication. Precise control of dose deposited offers determined chain scission in the polymer to required depth enabling 1800 discrete gray levels in a chip of area 20 mm
Language	English
Publishing date	2022-02-17
Publishing country	England
Document type	Journal Article
ZDB-ID	2615211-3
ISSN	2045-2322 ; 2045-2322
ISSN (online)	2045-2322
ISSN	2045-2322
DOI	10.1038/s41598-022-06688-5
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Article ; Online: The impact of sleep problems on functional and cognitive outcomes in children with Down syndrome: a review of the literature.

Chawla, Jasneek K / Burgess, Scott / Heussler, Helen

Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine

2020 Volume 16, Issue 10, Page(s) 1785–1795

Abstract: Study objectives: The aim of this review was to summarize the existing literature on the association between sleep problems and cognition, function, and behavior in children with Down syndrome.: Methods: Embase, PubMed, CINAHL, and PsychINFO ... ...

Abstract	Study objectives: The aim of this review was to summarize the existing literature on the association between sleep problems and cognition, function, and behavior in children with Down syndrome. Methods: Embase, PubMed, CINAHL, and PsychINFO databases were searched to retrieve all studies published between 1990 and 2018 that evaluated the relationship between sleep and cognition, function, or behavior in children with Down syndrome. Results: Fifteen articles were included, which were mostly of a cohort or case-controlled design. Five articles addressed sleep and cognition only, 6 reported on sleep and behavior, and only 1 reported on sleep and functional ability. Three papers evaluated sleep and both cognition and behavior. Findings varied across studies with methodological differences, making it difficult to directly compare results. The association between sleep and behavior or cognition in children with Down syndrome remains uncertain, but a large study in 110 children provides strong evidence of a negative impact of sleep disorders on the accomplishment of daily life habits. Conclusions: The impact of coexisting sleep disorders in children with Down syndrome has not been widely studied, with only 15 relevant studies found through an extensive literature review. Large well-designed studies are required to fully understand this relationship further. This is important as sleep-disordered breathing and difficulties with sleep patterns and routines are highly prevalent in children with Down syndrome. Sleep may be one of the few treatable factors that can assist in improving long-term outcomes in this population.
MeSH term(s)	Activities of Daily Living ; Child ; Cognition ; Down Syndrome/complications ; Humans ; Sleep Apnea Syndromes ; Sleep Wake Disorders/complications ; Sleep Wake Disorders/epidemiology
Language	English
Publishing date	2020-11-06
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't ; Review
ZDB-ID	2397213-0
ISSN	1550-9397 ; 1550-9389
ISSN (online)	1550-9397
ISSN	1550-9389
DOI	10.5664/jcsm.8630
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Article: Sleep, Function, Behaviour and Cognition in a Cohort of Children with Down Syndrome.

Chawla, Jasneek K / Bernard, Anne / Heussler, Helen / Burgess, Scott

Brain sciences

2021 Volume 11, Issue 10

Abstract: ... underwent a sleep study and 61% were diagnosed with OSA (OAHI ≥ 1/h). Based on questionnaires, 86 ...

Abstract	Objective: To describe the sleep problems experienced by children with Down syndrome attending a tertiary sleep clinic and relationship with behaviour, function and cognition. Methods: Data were collected from children with Down syndrome aged 3-18 years old. Carers completed the Abbreviated Child Sleep Habits Questionnaire, Child Behaviour Checklist and Life-Habits Questionnaire at enrolment. Cognitive assessment (Stanford-Binet 5) was undertaken by a trained psychologist. Children received management for their sleep problem as clinically indicated. Results: Forty-two subjects with a median age of 6.8 years (Interquartile Range-IQR 4.5, 9.8) were enrolled. A total of 92% were referred with snoring or symptoms of Obstructive Sleep Apnoea (OSA), with 79% of those referred having had previous ENT surgery. Thus, 85% of all participants underwent a sleep study and 61% were diagnosed with OSA (OAHI ≥ 1/h). Based on questionnaires, 86% of respondents indicated that their child had a significant sleep disorder and non-respiratory sleep problems were common. Non-respiratory problems included: trouble going to sleep independently (45%), restless sleep (76%), night-time waking (24%) and bedtime resistance (22%). No significant correlations were found between sleep measures (behavioural and medical sleep problems) and the behavioural, functional or cognitive parameters. Conclusion: Sleep disorders were very common, especially non-respiratory sleep problems. OSA was common despite previous surgery. No association was found between sleep-related problems (snoring, sleep-study-confirmed OSA or non-respiratory sleep problem) and parent-reported behavioural problems, functional impairments or intellectual performance. This may reflect limitations of the measures used in this study, that in this population ongoing problems with daytime function are not sleep related or that a cross-sectional assessment does not adequately take into account the impacts of past disease/treatments. Further research is required to further evaluate the tools used to evaluate sleep disorders, the impact of those disorder on children with Down syndrome and interventions which improve both sleep and daytime function.
Language	English
Publishing date	2021-10-04
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2651993-8
ISSN	2076-3425
ISSN	2076-3425
DOI	10.3390/brainsci11101317
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Article ; Online: Sleep problems in Australian children with Down syndrome: the need for greater awareness.

Chawla, Jasneek K / Howard, Aidan / Burgess, Scott / Heussler, Helen

Sleep medicine

2021 Volume 78, Page(s) 81–87

Abstract: Background: Children with Down Syndrome (DS) have a high prevalence of obstructive sleep apnoea (OSA). Non-respiratory sleep disorders also occur commonly but are less well recognised. This cross-sectional study evaluates the prevalence of sleep ... ...

Abstract	Background: Children with Down Syndrome (DS) have a high prevalence of obstructive sleep apnoea (OSA). Non-respiratory sleep disorders also occur commonly but are less well recognised. This cross-sectional study evaluates the prevalence of sleep difficulties in a community sample of Australian children with DS (DS Methods: The CSHQ was completed by parents of children with DS recruited from the community (DS Results: There were 76 participants in the DS Conclusions: This study reports a high prevalence of sleep problems in both a community and referred group of Australian children with DS and suggests that there are many children with DS with sleep problems, particularly non-respiratory difficulties, who are potentially not receiving adequate treatment.
MeSH term(s)	Australia/epidemiology ; Child ; Cross-Sectional Studies ; Down Syndrome/complications ; Down Syndrome/epidemiology ; Female ; Humans ; Male ; Sleep ; Sleep Wake Disorders/epidemiology ; Surveys and Questionnaires
Language	English
Publishing date	2021-01-04
Publishing country	Netherlands
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2012041-2
ISSN	1878-5506 ; 1389-9457
ISSN (online)	1878-5506
ISSN	1389-9457
DOI	10.1016/j.sleep.2020.12.022
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