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Summary 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. [ABSTRACT FROM AUTHOR]

Sleep disorders are prevalent in children with Down Syndrome (DS). However, sleep treatment is not always readily accessed by this group. This study aims to understand families' experiences of having a child with DS and sleep difficulties, and in particular, their healthcare experiences, with the goal of informing practice improvements. We conducted semi-structured interviews with 34 parents (fathers n = 4 and mothers n = 30) with open-ended questions about parents' experiences of sleep, family dynamics, and healthcare. We operationalized a reflexive Thematic Analysis. Parents normalized their experiences of having a child with DS and sleep problems. Parents acknowledged that sleep disruption has adverse and pervasive impacts on their wellbeing and family dynamics, but also found this difficult to identify as a health problem. They accepted sleep difficulties as a regular part of bringing up any child, particularly one with a disability. When they did seek treatment for their child's sleep difficulties, parents often reported encountering insensitive and inadequate care and described that, at times, healthcare professionals also normalized children's sleep difficulties, resulting in sub-optimal treatment. This included at times failure to refer to tertiary sleep medicine services when required. Parents' and healthcare professionals' normalization of sleeping difficulties denies that they are both deleterious and modifiable. Practice implications include raising healthcare professionals' awareness of the importance of proactively addressing sleep, with sensitivity to families' normalization strategies, recognizing that families may require prompting to report concerns. [ABSTRACT FROM AUTHOR]

Background: Extended reality (XR) technology such as virtual and augmented reality is increasingly being utilised in paediatric medicine due to its role in medical education and reported positive impacts on outcomes including pain, anxiety, and sleep. To the author's knowledge, no previous reviews investigating the use of XR in paediatric intensive care have been undertaken. Objectives: To scope the use of XR in paediatric intensive care, and assess its barriers to adoption, including safety considerations, cleaning and infection control. Eligibility criteria: All articles of any methodological design discussing the use of XR within paediatric intensive and critical care were included. Sources of evidence: Four databases (EMBASE, CINAHL, PsychInfo, PubMed) and Google Scholar were searched without any limitations on publication year. Charting methods: Data was extracted into Microsoft Excel by two authors independently (AG & SF) and cross-checked for completeness. Results: One hundred and eighty-eight articles were originally identified. Following the application of eligibility criteria 16 articles utilising XR in clinical interventions (n = 7) and medical education (n = 9) were included. Articles utilised VR and AR for highly variable purposes within both medical education (eg disaster preparedness, intubation) and clinical interventions (eg decrease pain, nausea, anxiety and improve Glasgow Coma Scale). Conclusions: While research into the use of XR in paediatric intensive care is still in its infancy it has increased dramatically over the past 5 years within two key areas. Firstly, in healthcare education, to assist in the acquisition of PICU-specific knowledge and practice of skills such as intubation of difficult airways. Secondly, studies have evaluated and demonstrated that with appropriate use, VR appears to be a safe and feasible intervention to decrease pain and anxiety in PICU patients. [ABSTRACT FROM AUTHOR]

The goal of this position paper on ventilatory support at home for children is to provide expert consensus from Australia and New Zealand on optimal care for children requiring ventilatory support at home, both non-invasive and invasive. It was compiled by members of the Thoracic Society of Australia and New Zealand (TSANZ) and the Australasian Sleep Association (ASA). This document provides recommendations to support the development of improved services for Australian and New Zealand children who require long-term ventilatory support. Issues relevant to providers of equipment and areas of research need are highlighted. [ABSTRACT FROM AUTHOR]

BACKGROUND AND OBJECTIVES: The Preschool Obstructive Sleep Apnea Tonsillectomy and Adenoidectomy study is a prospective randomized controlled study of children aged 3 to 5 years. This follow-up evaluated postoperative outcomes 24 months after randomization. METHODS: Baseline, 12-month, and 24-month assessments included intellectual ability, polysomnography, audiology, a pediatric sleep questionnaire, the parent rating scale of the Behavior Assessment System for Children, and the Behavior Rating Inventory of Executive Functioning. RESULTS: In total, 117 (55% male) of 190 children, 61.6% of those initially randomly assigned, attended 24-month follow-up; 62 of 99 were assigned T/A within 2 months (eT/A); and 55 of 91 were assigned to T/A after the 12-month follow-up (T/A12). Intellectual ability, our primary outcome, did not differ according to the timing of T/A. Exploratory analyses revealed changes in both groups after T/A, including fewer children having day sleeps (eT/A from baseline 97% to 11%,T/A12 from 36% at 12 months to 9%), improved symptom scores (eT/A 0.62 to 0.25, T/A12 0.61 to 0.26; P < .001), improved behavior T-scores (eT/A 71.0 to 59.9, T/A12 63.6 to 50.5; P < .001), and improved polysomnography (obstructive apnea- hypopnea index eT/A 1.9 to 0.3 per hour, T/A12 1.3 to 0.3; P < .001). The eT/A group revealed temporary postoperative improvement of Woodcock-Johnson III subscales (sound blending and incomplete word scores) and behavioral withdrawal. CONCLUSIONS: T/A for mild obstructive sleep apnea led to large improvements in sleep and behavior in preschool-aged children, regardless of the timing of surgery. [ABSTRACT FROM AUTHOR]

Obstructive Sleep Apnoea (OSA) is common in children with Down Syndrome (DS). Adenotonsillectomy is regarded as first line treatment for OSA but does not always lead to resolution of symptoms in this group of children. Management of residual OSA is variable with no existing recommendations to guide clinical practice. To describe the experience of a large tertiary sleep service in managing residual OSA in children with DS following upper airway surgery (adenotonsillectomy, adenoidectomy or tonsillectomy). A retrospective study of children who were under evaluation at the Queensland Children's Hospital sleep medicine department between October 2013 to April 2022 for residual OSA, after upper airway surgery was undertaken. 148 children with DS who underwent polysomnography for evaluation of OSA were identified. 100 were included in this study and of these, 77 underwent adenotonsillectomy, 19 adenoidectomy, and 4 tonsillectomy. Post-surgical PSG data of all 100 children showed residual mixed sleep disordered breathing in 68 children. 41 were recommended CPAP following surgery, while 21 underwent further surgery. Residual OSA was confirmed to be highly prevalent in children with DS who had already undergone upper airway surgery for OSA. This study identified that CPAP is possible to establish in most children with DS and can be used to manage residual OSA in this population. Approximately one-third of this group were able to discontinue therapy at a median duration of 18 months, suggesting resolution of disease with time can occur in some children. • Improvement in OSA severity post-initial surgery seen in 62% of children. • Residual moderate-severe OSA seen following surgical management in 33% of children. • 82.9% of children initiated on CPAP therapy were able to sustain it for >12 months. • 31.7% of children commenced on CPAP were able to cease after 15 months. [ABSTRACT FROM AUTHOR]

The aim of this systematic review is to summarise the existing literature regarding management of residual obstructive sleep apnoea post adenotonsillectomy in children with Down Syndrome. PubMed, EMBASE, Cochrane and Scopus were searched to retrieve all studies published up to May 2020 regarding the management of obstructive sleep apnoea in children with Down Syndrome post adenotonsillectomy. Eight studies were identified including five retrospective studies, two prospective and one case series. Five articles addressed surgical treatments only, two articles addressed hypoglossal nerve stimulation and one article addressed both surgical and medical treatments. Findings were similar across most studies where the obstructive apnoea hypopnoea index (oAHI) was reduced post intervention however given the heterogeneity in methodology and patient demographics, results were not directly comparable. Limited evidence was found regarding BMI and outcome post-surgery, suggesting that those who were normal weight or overweight had a significant reduction in the oAHI, compared to those who were obese. The most optimal treatment for the management of residual obstructive sleep apnoea remains uncertain. There are various treatment options described in the literature, however, they have not been thoroughly studied, with only eight relevant articles found. Studies comparing outcomes following different treatment interventions and using consistent parameters are required to gain further understanding of the most optimal treatment for residual obstructive sleep apnoea in this population. Understanding if specific phenotypic features, such as weight, influence response to therapy will also be important. This information will help to develop treatment algorithms, which will assist in improving patient care by directing treatment and ensuring a more consistent approach to overall management. The high prevalence of residual obstructive sleep apnoea in children with Down Syndrome following first line treatment makes this a clinically important area to target in this particular cohort of children to avoid long term complications of untreated OSA. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Families of children with Down syndrome experience complex lives and needs, yet the few existing studies on these families are written in conventional academic prose that is not optimal for knowledge translation beyond academia, particularly for busy healthcare professionals. In this paper, we Depart Radically in Academic Writing (DRAW) (Mackinlay, 2022) and present data poetry and two case studies that draw upon semi-structured interviews with mothers, fathers, and siblings, who were interviewed separately about their experiences of having a child/sibling with Down syndrome. We introduce our interdisciplinary team that includes academics and clinicians to contextualise our focus on research translation. We demonstrate that writing with creative criticality (i.e. 'DRAWing') contributes an embodied and affective understanding of research participants' stories, which is largely lacking in the academic literature on families of children with Down syndrome and the sociology of health and illness field more broadly. Moreover, DRAWing can impact audiences emotionally as well as intellectually (Richardson, 2003, p. 924), which has important knowledge translation implications for both healthcare professionals and these families. DRAWing can capture healthcare professionals' attention, prompting them to critically reflect on their practices and opportunities for improving care and treatment for these families. [ABSTRACT FROM AUTHOR]

Obstructive sleep apnea (OSA) is a common problem in children and can result in developmental and cognitive complications if untreated. The gold-standard tool for diagnosis is polysomnography (PSG); however, it is an expensive and time-consuming test to undertake. Overnight oximetry has been suggested as a faster and cheaper initial test in comparison to PSG as it can be performed at home using limited, reusable equipment. This retrospective case control study aims to evaluate the effectiveness of a home oximetry service (implemented in response to extended waiting times for routine PSG) in reducing the time between patient referral and treatment. Patients undergoing diagnostic sleep evaluation for suspected OSA who utilized the Queensland Children's Hospital screening home oximetry service in the first year since its inception in 2021 (n = 163) were compared to a historical group of patients who underwent PSG in 2018 (n = 311). Parameters compared between the two groups included time from sleep physician review to sleep test, ENT review, and definitive treatment in the form of adenotonsillectomy surgery (or CPAP initiation for those who had already undergone surgery). The time from sleep physician review and request of the sleep-related study to ENT surgical treatment was significantly reduced (187 days for the HITH oximetry group vs 359 days for the comparable PSG group; p-value <0.05), and time from sleep study request to the report of results was significantly lower for patients in the oximetry group compared to those in the PSG group (11 days vs 105 days; p-value <0.05). These results suggest that for children referred to a tertiary sleep center for possible obstructive sleep disordered breathing, a home oximetry service can be effective in assisting sleep evaluation and reducing the time to OSA treatment. [ABSTRACT FROM AUTHOR]

To determine the variability of overnight oximetry parameters in a group of normal, healthy term infants; to enable the calculation of the number of subjects required to produce reliable reference ranges for neonatal overnight oximetry. A convenience sample of normal, healthy term neonates was recruited. Each had overnight oximetry using the Masimo SET Radical oximeter (data downloaded using Profox software). The report included the number of oxygen desaturation events (an absolute decrease in SpO 2 of 4 or more), and the duration of oxygen saturations <90%. 21 babies were recruited with data available from 19. 32% were female; 68% born by vaginal delivery; 37% fully breast feeding, 53% bottle and 11% by a combination of both. The mean (SD) GA was 39.2 (0.79) weeks, the mean (SD) BW was 3477 (240) grams. The median (IQR) post-natal age at the time the oximetry recording started was 31 (28–41) hours; four babies were <24 h old. All babies had some desaturation events ranging from 4 to 36 times per hour. On average babies spent 3.0% (SD 2.3) of the time with an SpO 2 < 90% (range 0.12–7.94). In a cohort of healthy term neonates, as assessed by overnight oximetry, the mean SpO 2 was 97% (SD 1, range 95–99). All neonates had a number of oxygen desaturation events ranging from 4 to 36 per hour. The mean proportion of time spent with oxygen saturations below 90% was around 3%. • Well term neonates in the first few days of life have frequent oxygen desaturation events (decrease by 4 or more) • The number of desaturation events is very variable (up to 36 times an hour). • Our data allows sample size calculation for a larger study to establish reference ranges for overnight oximetry parameters [ABSTRACT FROM AUTHOR]

Objective: To determine the variability of overnight oximetry parameters in a group of normal, healthy term infants; to enable the calculation of the number of subjects required to produce reliable reference ranges for neonatal overnight oximetry.Methods: A convenience sample of normal, healthy term neonates was recruited. Each had overnight oximetry using the Masimo SET Radical oximeter (data downloaded using Profox software). The report included the number of oxygen desaturation events (an absolute decrease in SpO2 of 4 or more), and the duration of oxygen saturations <90%.Results: 21 babies were recruited with data available from 19. 32% were female; 68% born by vaginal delivery; 37% fully breast feeding, 53% bottle and 11% by a combination of both. The mean (SD) GA was 39.2 (0.79) weeks, the mean (SD) BW was 3477 (240) grams. The median (IQR) post-natal age at the time the oximetry recording started was 31 (28-41) hours; four babies were <24 h old. All babies had some desaturation events ranging from 4 to 36 times per hour. On average babies spent 3.0% (SD 2.3) of the time with an SpO2 < 90% (range 0.12-7.94).Conclusions: In a cohort of healthy term neonates, as assessed by overnight oximetry, the mean SpO2 was 97% (SD 1, range 95-99). All neonates had a number of oxygen desaturation events ranging from 4 to 36 per hour. The mean proportion of time spent with oxygen saturations below 90% was around 3%. [ABSTRACT FROM AUTHOR]