Diagnosis and management in Rubinstein-Taybi syndrome: first international consensus statement.

Rubinstein-Taybi syndrome (RTS) is an archetypical genetic syndrome that is characterised by intellectual disability, well-defined facial features, distal limb anomalies and atypical growth, among numerous other signs and symptoms. It is caused by variants in either of two genes (CREBBP, EP300) which encode for the proteins CBP and p300, which both have a function in transcription regulation and histone acetylation. As a group of international experts and national support groups dedicated to the syndrome, we realised that marked heterogeneity currently exists in clinical and molecular diagnostic approaches and care practices in various parts of the world. Here, we outline a series of recommendations that document the consensus of a group of international experts on clinical diagnostic criteria for types of RTS (RTS1: CREBBP; RTS2: EP300), molecular investigations, long-term management of various particular physical and behavioural issues and care planning. The recommendations as presented here will need to be evaluated for improvements to allow for continued optimisation of diagnostics and care.

Towards a Distinct Sleep and Behavioural Profile of Fetal Alcohol Spectrum Disorder (FASD): A Comparison between FASD, Autism and Typically Developing Children.

BACKGROUND: The term Fetal Alcohol Spectrum Disorders (FASD) describes a range of neurodevelopmental conditions, the direct result of prenatal alcohol exposure. FASD encompasses a range of behavioural, cognitive and sleep patterns that are sometimes indiscernible from other neurodevelopmental conditions, one in particular being Autism Spectrum Disorders (ASD). This study aimed to provide a comparison of behavioural, cognitive, affect-related and sleep profiles in children aged between 6 and 15 years with diagnoses of FASD or ASD, in contrast to typically developing (TD) children. METHODS: We compared 29 children with FASD, 21 children with ASD and 45 typically developing (TD) children on parental-reported questionnaires measuring behaviour and executive functioning: the Child Behaviour Checklist (CBCL), the Spence Children's Anxiety Scale (SCAS) and the Behaviour Rating Inventory for Executive Function (BRIEF). Additionally, parents completed the Children's Sleep Habits Questionnaire (CSHQ), and children wore actigraphy watches while sleeping to objectively capture their sleep habits. The three groups were compared using ANCOVA, controlling for age effects. RESULTS: Children with FASD scored significantly higher than the other two groups on the CBCL subscales of attention problems, somatic complaints, social problems, delinquency, and aggressive behaviour, as well as the panic subscale of the SCAS. Children with FASD also scored higher on all measures of the BRIEF than the ASD and TD groups, indicating greater problems with working memory and more difficulty shifting between tasks, planning, organising, inhibiting their behaviour and exercising emotional control. Nocturnal sleep duration in children with FASD was reported as one hour less than TD children and 46 minutes less than children with ASD per night. CONCLUSIONS: The findings in this study highlight several syndrome specific features (shorter sleep duration, executive functioning difficulties, and higher levels of social and behavioural problems and panic) that potentially contribute to the unique phenotype of FASD. Whilst this research highlights the need for further work in this area, initial clinical screening for FASD should take such data on discernible characteristics, particularly the syndrome specificity of the BRIEF, into consideration.

Psychosocial interventions for men with prostate cancer: a Cochrane systematic review.

To evaluate the effectiveness of psychosocial interventions for men with prostate cancer in improving quality of life (QoL), self-efficacy and knowledge and in reducing distress, uncertainty and depression. We searched for trials using a range of electronic databases including the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE and PsycINFO to October 2013, together with hand searching of journals and reference lists. Randomised controlled trials were eligible if they included psychosocial interventions that explicitly used one or a combination of the following approaches: cognitive behavioural, psycho-educational, supportive and counselling. Interventions had to be delivered or facilitated by trained or lay personnel. Our outcomes were an improvement in QoL, self-efficacy and knowledge and a reduction in distress, uncertainty and depression. Pairs of review authors independently extracted data and assessed risk of bias. We analysed data using standardised mean differences (SMDs), random-effects models and 95% confidence intervals (CIs). In all, 19 studies with a total of 3 204 men, with a diagnosis of prostate cancer, comparing psychosocial interventions vs usual care were included in this review. Men in the psychosocial intervention group had a small, statistically significant improvement in the physical component of general health-related QoL (GHQoL) at end of intervention (SMD 0.12, 95% CI 0.01-0.22) based on low quality evidence. There was no clear evidence of benefit associated with psychosocial interventions for the mental component of GHQoL at end of intervention (SMD -0.04, 95% CI -0.15 to 0.06) based on moderate quality evidence. At end of intervention, cancer-related QoL showed a small improvement after psychosocial interventions (SMD 0.21, 95% CI 0.04-0.39). For prostate cancer-specific and symptom-related QoL, the differences between intervention and control groups were not significant. There was no clear evidence that psychosocial interventions were beneficial in improving self-efficacy at end of intervention (SMD 0.16, 95% CI -0.05 to 0.38) based on very low quality evidence. Men in the psychosocial intervention group had a moderate increase in prostate cancer knowledge at end of intervention (SMD 0.51, 95% CI 0.32-0.71) based on very low quality evidence. A small increase in knowledge with psychosocial interventions was noted at 3 months after intervention (SMD 0.31, 95% CI 0.04-0.58). The results for uncertainty (SMD -0.05, 95% CI -0.35 to 0.26) and distress (SMD 0.02, 95% CI -0.11 to 0.15) at end of intervention were compatible with both benefit and harm based on very low quality evidence. Finally, there was no clear evidence of benefit associated with psychosocial interventions for depression at end of intervention (SMD -0.18, 95% CI -0.51 to 0.15) based on very low quality evidence. The overall risk of bias in the included studies was unclear or high, primarily as the result of performance bias. No data about stage of disease or treatment with androgen-deprivation therapy were extractable for subgroup analysis. Only one study addressed adverse effects. Overall, this review shows that psychosocial interventions may have small, short-term beneficial effects on certain domains of wellbeing, as measured by the physical component of GHQoL and cancer-related QoL when compared with usual care. Prostate cancer knowledge was also increased. However, this review failed to show a statistically significant effect on other domains such as symptom-related QoL, self-efficacy, uncertainty, distress or depression. Moreover, when beneficial effects were seen, it remained uncertain whether the magnitude of effect was large enough to be considered clinically important. The quality of evidence for most outcomes was rated as very low according to the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) system, reflecting study limitations, loss to follow-up, study heterogeneity and small sample sizes. We were unable to perform meaningful subgroup analyses based on disease stage or treatment method. Although some findings of this review are encouraging, they do not provide sufficiently strong evidence to permit meaningful conclusions about the effects of these interventions in men with prostate cancer. Additional well executed and transparently reported research studies are necessary to establish the role of psychosocial interventions in men with prostate cancer.

Childhood experiences and sleep problems: A cross-sectional study on the indirect relationship mediated by stress, resilience and anxiety.

BACKGROUND: Childhood experiences either adverse (ACE) or benevolent (BCE) can indirectly impact sleep quality in adult life, which in turn are modulated by the interplay of a variety of factors such as depression, anxiety, resilience and mental health problems. METHODS: A cross-sectional observational study was conducted across the UK and the Middle Eastern countries during the COVID-pandemic on 405 participants. An online survey used a combination of questionnaires to assess ACE and BCEs. The following tools were then used to assess the contribution of resilience, stress, depression and anxiety respectively: Brief Resilience Scale (BRS), Perceived Stress Scale (PSS-10), Patient Health Questionnaire-2 (PHQ-2) and General Anxiety Disorder-2 (GAD-2) scale on childhood experiences. The extent of sleep disturbances experienced over a period of seven days was assessed using the PROMIS Sleep Disturbance Short-Form Tool. A serial-parallel mediation model was used to evaluate the impact of the mediators on childhood experiences and sleep quality. RESULTS: Over 50% of the cohort were from Middle Eastern countries. Four or more BCEs were experienced by 94.3% of the cohort. In contrast, 67.9% of participants experienced at least one ACE before the age of 18 years, with moderate levels of stress, mild depression and anxiety were reported in 3.7%, 13% and 20% of participants respectively. Whilst 25.4% of participants reported having had four or more ACEs, with higher reports in the middle easter countries (32%). ACEs were found to correlate with sleep disturbance whilst BCEs showed an inverse correlation. The relationship between ACE and sleep disturbances was shown to be mediated by stress, and anxiety, but not by resilience or depression. Resilience and stress, and resilience and anxiety serially mediated the interaction between ACE and sleep disturbance. With regards to BCE, an inverse association with sleep disturbance was recorded with similar mediators of stress and anxiety observed. CONCLUSION: This study confirms the negative effects of ACEs, and the positive effects of BCEs on sleep in adulthood which are both mediated predominantly by psychological resilience, anxiety and stress. Strategies aimed at improving psychological resilience as well as addressing stress and anxiety may help improve sleep quality.

Psychosocial interventions for men with prostate cancer.

BACKGROUND: As the incidence and prevalence of prostate cancer continue to rise, the number of men needing help and support to assist them in coping with disease and treatment-related symptoms and their psychosocial effects is likely to increase. OBJECTIVES: To evaluate the effectiveness of psychosocial interventions for men with prostate cancer in improving quality of life (QoL), self-efficacy and knowledge and in reducing distress, uncertainty and depression. SEARCH METHODS: We searched for trials using a range of electronic databases including the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE and PsycINFO to October 2013, together with handsearching of journals and reference lists. SELECTION CRITERIA: Randomised controlled trials of psychosocial interventions for men at any stage of prostate cancer. We included psychosocial interventions that explicitly used one or a combination of the following approaches: cognitive behavioural, psychoeducational, supportive and counselling. Interventions had to be delivered or facilitated by trained or lay personnel. DATA COLLECTION AND ANALYSIS: Pairs of review authors independently extracted data and assessed risk of bias. We analysed data using standardised mean differences (SMDs), random-effects models and 95% confidence intervals (CIs). MAIN RESULTS: Nineteen studies comparing psychosocial interventions versus usual care in a total of 3204 men with prostate cancer were included in this review. All but three of these studies were conducted in the United States.Men in the psychosocial intervention group had a small, statistically significant improvement in the physical component of general health-related quality of life (GHQoL) at end of intervention (1414 participants, SMD 0.12, 95% CI 0.01 to 0.22) based on low-quality evidence. A small improvement in favour of psychosocial interventions (SMD 0.24, 95% CI 0.02 to 0.47) was also seen in the physical component of GHQoL at end of intervention for group-based interventions. No clear evidence of benefit was found for GHQoL scores at end of intervention with individual-based interventions compared with controls. Also, no clear evidence suggested that psychosocial interventions were beneficial in improving the physical component of GHQoL at four to six and at eight to 12 months post-intervention. In addition, no clear evidence showed benefit associated with psychosocial interventions for the mental component of GHQoL at end of intervention (1416 participants, SMD -0.04, 95% CI -0.15 to 0.06) based on moderate-quality evidence. Results for the mental component of GHQoL at four to six and at eight to 12 months post-intervention were compatible with benefit and harm. At end of intervention, cancer-related QoL showed a small improvement following psychosocial interventions (SMD 0.21, 95% CI 0.04 to 0.39), but at eight and 12 months, the effect was compatible with benefit and harm. For prostate cancer-specific and symptom-related QoL, the differences between groups were not significant.No clear evidence indicated that psychosocial interventions were beneficial in improving self-efficacy at end of intervention (337 participants, SMD 0.16, 95% CI -0.05 to 0.38) based on very low-quality evidence in three studies that assessed individual-based interventions. The results for self-efficacy at six to eight and at 12 months post-intervention were compatible with benefit and harm. Men in the psychosocial intervention group had a moderate increase in prostate cancer knowledge at end of intervention (506 participants, SMD 0.51, 95% CI 0.32 to 0.71) based on very low-quality evidence in two studies; this increase was also observed in the subgroups of group-based and individual-based interventions. A small increase in knowledge with psychosocial interventions was noted at three months post-intervention (SMD 0.31, 95% CI 0.04 to 0.58).The results for uncertainty (916 participants, SMD -0.05, 95% CI -0.35 to 0.26) and distress (916 participants, SMD 0.02, 95% CI -0.11 to 0.15) at end of intervention were compatible with both benefit and harm based on very low-quality evidence. No clear evidence suggests that psychosocial interventions were beneficial in reducing uncertainty and distress between groups at six to eight and at 12 months post-intervention. Finally, no clear evidence of benefit is associated with psychosocial interventions for depression at end of intervention (434 participants, SMD -0.18, 95% CI -0.51 to 0.15) based on very low-quality evidence. Individual-based interventions significantly reduced depression when compared with usual care groups. The results for depression at six and at 12 months post-intervention were compatible with benefit and harm.The overall risk of bias in the included studies was unclear or high, primarily as the result of performance bias.No data regarding stage of disease or treatment with androgen deprivation therapy (ADT) were extractable for subgroup analysis. Only one study addressed adverse effects. High attrition could indicate that some participants may not have been comfortable with the interventions. AUTHORS' CONCLUSIONS: Overall, this review shows that psychosocial interventions may have small, short-term beneficial effects on certain domains of well-being, as measured by the physical component of GHQoL and cancer-related QoL when compared with usual care. Prostate cancer knowledge was also increased. However, this review failed to demonstrate a statistically significant effect on other domains such as symptom-related QoL, self-efficacy, uncertainty, distress or depression. Moreover, when beneficial effects were observed, it remained uncertain whether the magnitude of effect was large enough to be considered clinically important. The quality of evidence for most outcomes was rated as very low according to GRADE, reflecting study limitations, loss to follow-up, study heterogeneity and small sample sizes. We were unable to perform meaningful subgroup analyses based on disease stage or treatment modality. Although some findings of this review are encouraging, they do not provide sufficiently strong evidence to permit meaningful conclusions about the effects of these interventions in men with prostate cancer. Additional well-done and transparently reported research studies are necessary to establish the role of psychosocial interventions in men with prostate cancer.

Parental Experiences of Melatonin Administration to Manage Sleep Disturbances in Autistic Children and Adolescent in the UK.

BACKGROUND: Autistic children and adolescents are 40-80% more likely to experience sleep disturbances than their neurotypical peers. In the United Kingdom, melatonin is licensed for short-term usage in adults at age 55 years and above; however, it is often prescribed to autistic children and adolescents to help manage their sleep. The current study sought to understand parental experiences and their motivation of using melatonin to manage sleep disturbances of their autistic children. METHODS: The sample included 26 parents who took part in online focus groups answering questions regarding their experiences of using melatonin as a sleep treatment for their children diagnosed with autism between 4 and 18 years old. RESULTS: Four main themes were identified: (i) parental perception of melatonin used as 'a naturally produced hormone'; (ii) perceived benefits of using melatonin to improve their child's sleep; (iii) administration of melatonin: dosage amount, timing and pulverising; and (iv) expectation and apprehension over melatonin use. CONCLUSION: Some parents reported success with the use of melatonin, and others reported the effects being limited or diminishing in time. Suggestions for healthcare professionals and families regarding melatonin usage in the UK are made with respect to setting clear guidelines for usage, whilst ensuring expectations are set and managed appropriately.

Telehealth delivery of adapted CBT-I for insomnia in chronic pain patients: a single arm feasibility study.

Objectives: A large proportion of individuals with chronic pain experience insomnia-related symptoms which can be persistent in nature, and negatively impact one's quality of life. This single arm trial aimed to investigate the feasibility and preliminary efficacy of CBT-I, adapted for people with chronic musculoskeletal pain, delivered via telehealth. Methods: We conducted a single arm feasibility trial in which 10 adult women (M age = 50.76 years, SD = 8.03 years) with self-reported insomnia and a diagnosed chronic musculoskeletal chronic pain received six CBT-I individual treatment sessions over 6-10 weeks. Treatment was delivered via telehealth. Participants completed weekly sleep diaries, and self-reported measures of insomnia, pain, anxiety and depression pre-treatment, post-treatment, and one-month follow-up. Results: The trial yielded, high levels of compliance with intervention protocols, and affirmative feedback on satisfaction which demonstrated feasibility. The enrolment rate into the study was 37% (27 participants screened, 10 participants enrolled). The intervention was associated with statistically and clinically meaningful improvements in self-reported insomnia severity. There were statistically significant improvements in sleep efficiency, wake after sleep onset, sleep onset latency, anxiety and depression. Conclusion: Adapted CBT-I delivered via telehealth may be a feasible, acceptable, and efficacious therapeutic approach for individuals with co-existent sleep and chronic pain. Future trials should adopt a randomized design against usual care.

Mindfulness as a Potential Moderator Between Child Behavior Problems and Maternal Well-Being.

Mindfulness-based programs can help lower psychological distress among parents of children with developmental disabilities. However, less is known about the functions of mindfulness in relation to parental outcomes. In a cross-sectional survey, mothers of children with developmental disabilities (N = 313) reported on their child's behavior problems, trait mindfulness, mindful parenting, and a range of outcomes (anxiety and depression symptoms, parenting stress, family satisfaction, and positive gain). Neither trait mindfulness or mindful parenting acted as moderators between child behavior problems and outcome variables, although both had main effect (compensatory) associations with parent outcomes. Benefits of mindfulness-based programs may be general rather than specifically in the context of high child behavior problems, given the lack of evidence for the moderating function of mindfulness.

Cross-country comparison of parental reports and objective measures of sleep patterns of typically developing children and autistic children between the UK and South Korea.

Sleep duration and disturbances in typically developing (TD) children have been found to vary across countries. Given the impact of culture on sleep patterns in TD children, it is also necessary to examine the impact of culture on sleep patterns in children with atypical development. However, previous studies have often relied only on parent reports of children's sleep. Hence, the present study conducted a cross-cultural comparison of sleep duration and disturbances of school-aged TD children and autistic children in the UK and South Korea (hereafter Korea) using both subjective and objective sleep measurements. Cultural differences were observed in both actigraphy measures and parent reports of children's sleep duration and disturbances. Both TD children and autistic children in Korea had a later bedtime, later getting up time and shorter nocturnal sleep duration than their peers in the UK (p < .05). Furthermore, greater parent-reported sleep disturbances were reported in TD children in Korea compared to TD children in the UK and in autistic children in the UK compared to autistic children in Korea. Correlational analyses indicated that most parent-reported measures of children's sleep did not significantly correlate with objective measures and child reports, suggesting that studies on children's sleep can benefit by collecting data from multiple sources. Taken together, these findings suggest a cultural influence on sleep duration and disturbances of both TD children and autistic children. This study raises questions for further research to identify factors underlying cultural differences in children's sleep duration and disturbances.

Risk and protective factors associated with maternal mental health in mothers of children with autism spectrum disorder.

BACKGROUND: Mothers of children with Autism Spectrum Disorder (ASD) experience lower maternal mental health outcomes than mothers of children from other populations, including children with intellectual and developmental disorders. OBJECTIVES: This study explored risk factors associated with maternal mental health. Several factors including maternal resilience, social support, coping, optimism and family functioning acted as protective factors between child behavioural and emotional problems and maternal mental health. METHODS: Mothers of 70 children completed a cross-sectional online survey. Twenty-two children were diagnosed with ASD, 16 children were diagnosed with Dyslexia (DYS) and 32 children had no special educational needs diagnosis (NO SEND). RESULTS: Mothers of children with ASD demonstrated greater maternal mental health problems compared to mothers of children with DYS and NO SEND. Socioeconomic status (SES), child diagnosis, child gender, and child behavioural and emotional problems were significant risk factors associated with reduced maternal mental health. Maternal resilience, family functioning, and practical coping served as protective factors, moderating the relationship between child behavioural and emotional problems and maternal mental health. There is little evidence to suggest social support, optimism, and wishful thinking were protective factors in this relationship between child behavioural and emotional problems and maternal mental health. IMPLICATIONS: There is a need to support mothers of children with ASD through interventions to promote and increase their mental health.

An Exploratory Analysis of the Effect of Demographic Features on Sleeping Patterns and Academic Stress in Adolescents in China.

Adolescents typically engage in unhealthy lifestyle habits including short sleep and high academic stress. These in turn may have serious impacts on their development. The present study examines the effect of demographic characteristics on sleep patterns and academic stress in adolescents. A sample of 244 (119 females) junior high school adolescents aged between 11 and 16 were recruited from China. The Student Life Stress Questionnaire and the School Sleep Habits Survey were used to assess participants' sleep habits and academic stress. Multipair and corrected pairwise Kruskal-Wallis tests were conducted to assess the effect of school grade, gender, academic performance level, living situation, single child status, and parental education on adolescents' sleeping patterns and academic stress. Significant changes in facets of sleeping patterns emerged when examining groups of students in terms of school grade, living situation, and single-child status. Furthermore, caffeine consumption was found to be significantly higher in males, in students with poorer academic performances, and in single-child adolescents. Ultimately, academic stress was modulated by adolescents' school grade, academic performances, living situation, and single-child status. Developmental trajectories in sleep patterns together with differential exposure to stressors and adopted coping mechanisms are discussed in the manuscript.

Acute impact of a national lockdown during the COVID-19 pandemic on wellbeing outcomes among individuals with chronic pain.

Changes to wellbeing in a community-based sample of 638 adults with non-malignant chronic pain were assessed during a period of mandated lockdown measures in the UK to control the COVID-19 outbreak. Participants completed an online survey pre-lockdown and were followed up during lockdown. Multivariate analysis demonstrated that decreased ability to self-manage pain, restricted access to healthcare and increased dependence on others were associated with negative wellbeing outcomes related to sleep, anxiety and depression. Essential but non-urgent services are required during periods of lockdown to maintain independence and self-management in order to preserve wellbeing in this population.

Exploring the feasibility and acceptability of a sleep wearable headband among a community sample of chronic pain individuals: An at-home observational study.

Background: Chronic pain conditions affect up to one third of the adult population in the United Kingdom. Sleep problems are prevalent and negatively impact quality of life. Lack of standardised tools for routine screening and assessment of sleep changes have been a barrier for sleep management. Novel sleep wearables offer an exciting and accessible way to measure sleep but have not been tested outside of the consumer-led landscape and are not commonly used in research and clinical settings. Aims: The study aimed to explore the feasibility and acceptability of a sleep monitoring headband (Dreem 2) utilising EEG technology and accompanying smartphone application among a cohort of adults with chronic pain. Results: Twenty-one adults (81% women) completed a one-week home sleep study using a sleep headband and accompanying app. Ninety per cent of participants met the pre-defined requirement of two-night's sleep recording. All participants recorded one night of sleep data via the sleep headband. The majority (76%) of participants were satisfied with the sleep study, and 86% of participants were willing to wear the headband longer than the 2-night minimum requirement. Finally, 76% reported the headband as 'somewhat' or 'extremely' comfortable whist awake; 57% rated the headband as comfortable during sleep. Conclusion: The Dreem 2 headband appears to be a feasible and acceptable means of collecting sleep measurements among individuals with chronic pain, despite common sleep disturbances. These devices may have utility for screening, assessment and monitoring in research and practice. Further research is needed to provide guidelines and training for integration.

Alterations in Cortisol Profiles among Mothers of Children with ASD Related to Poor Child Sleep Quality.

Caregivers of children with autism spectrum disorder (ASD) experience poorer sleep, but studies have not yet used objective measures to investigate how child and caregiver sleep affect each other. In this study, 29 mothers and their child with ASD aged between 6 and 16 years were recruited. Questionnaires measuring child autism, maternal depression, and maternal and child sleep quality were administered. Cortisol salivary samples were also obtained from the mothers over the course of a day. Results revealed that maternal depression is significantly correlated with their subjective sleep quality, sleep latency and daytime dysfunction. Child sleep quality was also found to be significantly correlated with ASD severity. In terms of maternal cortisol profiles, a significant number of mothers showed a flattened diurnal cortisol expression, and children of mothers with a flattened cortisol profile had significantly more sleep problems. Overall, results suggest that maternal and child sleep are affected by the child's disability but also are mutually related. Future studies may consider employing measures such as actigraphy or somnography to quantify sleep quality and establish causal pathways between sleep, cortisol expression and caregiver and child outcomes. The present study has clinical implications in examining family sleep when considering treatment for ASD.

The 2021 NICE guidelines for assessment and management of chronic pain: A cross-sectional study mapping against a sample of 1,000* in the community.

Objectives: To characterise the prevailing pharmacological and non-pharmacological pain management strategies among adults with chronic pain, comparing these against the newly published NICE guidelines NG-193, and examine these pre-NG-193 pain management strategies in relation to pain severity, pain interference, sleep quality and mental health outcomes. Design: This study was conducted using a cross-sectional online survey study design. Setting: This study was conducted on a community-dwelling cohort. Participants: Adults aged 18+, living in the UK, with diagnosis of chronic pain by a health care professional. Main outcome measures: Primary outcomes were characterisation of the pain management strategies utilised. Secondary outcomes were related to pain severity, pain interference, sleep quality, depression and anxiety via validated self-report measures. Results: Several strategies were employed by respondents to manage their chronic pain condition including physical therapy, exercise, psychological therapy and pharmacological therapy. The data also indicated a high level of joint-care planning among patients and their clinicians. Some group differences were found in relation to pain, sleep and mental health outcomes. Conclusion: This study set a comparative starting baseline to which the efficacy of the NG-193 may be compared in future years. There is evidence that NICE recommendations are being followed for the management of chronic primary pain conditions; however, pharmacological use of opioid drugs is still reported by 47%. Despite the confirmed evidence in this study of small efficacy of chronic pain by pharmacological agent, the reduction in the use of pain relief medications be it over the counter medications or prescription opioids, as recommended by NG-193, may be slow to be adopted. The data suggest that more care provision is needed to meet the recommendations around pharmacological management and review.

Habilitation of sleep problems among mothers and their children with autism spectrum disorder: Insights from multi-level exploratory dyadic analyses.

Few habilitation strategies for children with autism spectrum disorder (ASD) consider their sleep-related problems. Together with the fact that caregivers of children with ASD also face issues with sleep, there may be yet-to-be uncovered relationships between caregiver-child sleep patterns and sleep quality, offering a key opportunity for clinicians to consider the needs of both child and caregiver in terms of sleep. 29 dyads of mothers and their children with ASD were recruited for this cohort study and both subjective (self-report questionnaires and sleep diaries) and objective (cortisol samples and actigraphy) measures of sleep were collected to investigate significant predictors of sleep quality. Comparative, correlational, and hierarchical analyses were conducted. Findings indicated that both mother and child experience sleep deprivation in terms of shorter sleep duration and poor sleep quality in terms of longer sleep onset latencies and a higher frequency of wake bouts. Exploratory hierarchical analyses also found that child-related sleep difficulties such as sleep disordered breathing and night waking significantly predict mothers' sleep quality, which may point to the bi-directional influence of mother-child sleep. Based on these findings, it is recommended that clinicians adopt a family systems perspective and consider the sleep environment of the household, particularly that of the caregiver and child, when designing interventions for sleep-related problems in ASD. Finally, there is a need for additional support to promote good quality sleep among caregivers of children with ASD to bolster out-of-clinic care.

Exploring the relationship of sleep, cognition, and cortisol in sickle cell disease.

Background: Neurocognitive impairment is common in people with Sickle Cell Disease (SCD) and evidence is accumulating that sleep disturbances play a role. The interaction between cortisol and sleep in the general population is associated with cognition as well as general wellbeing but there are few data in SCD. We aimed to understand the relationship between cortisol and sleep in individuals with SCD and explored associations with cognition. Methods: Forty-five participants of black heritage (SCD: N = 27, 9-29 years, 16 females; Controls: N = 18, 11-25 years, 13 females) were recruited from the community between 2018 - 2020. Participants completed standardized questionnaires about their sleep behaviour and wore actigraphy MotionWatch8 for 7 nights to assess nocturnal sleep patterns. Salivary cortisol samples were taken on wakening and 3 times after 14:00. Cognition was assessed using the Wechsler Intelligence Scales for children and adults. Results: People with SCD took longer to fall asleep and experienced greater wake bouts, mobile minutes and fragmented sleep compared to controls. Although non-significant, people with SCD experienced lower morning cortisol, with a flattened diurnal cortisol ratio compared to controls. Interestingly, SCD participants, but not controls, with low diurnal variation scored lowest on processing speed (PSI) and perceptual reasoning index (PRI). A moderator analysis revealed that the effect of morning cortisol and diurnal cortisol ratio on PRI by group health (i.e., SCD and healthy controls) depended on sleep quality. Discussion: Sleep and cortisol may play a crucial role in the expression of cognitive difficulties seen in SCD. This should be considered for the development of interventions to optimise cognitive functioning and sleep. This, in turn, could positively impact on secretion of cortisol and general health in SCD.

Sleep-related learning in Williams Syndrome and Down's Syndrome.

This chapter addresses sleep research challenges for the study of neurodevelopmental disorders drawing upon two disorders such as Down Syndrome and Williams syndrome. General sleep problems are outlined here, however particular consideration is given to the syndrome-specific issues or challenges that may be crucial to advancing our understanding of sleep-related cognitive and behavioral issues.

Resilience and stigma in mothers of children with emotional and behavioural difficulties.

BACKGROUND: Mothers of children with intellectual and developmental disabilities (IDD) experience frequent and high levels of stigma from family, friends, and members of the public. This stigma can have a negative impact on mothers' psychological well-being, their social circle, and their relationship with their child. AIMS: The present study aimed to establish if there was a relationship between emotional and behavioural difficulties and stigma, and if resilience, social support and parental adjustment acted as a protective factors in this relationship. METHODS: 108 mothers of children aged between four and 16 years old with IDD participated in a cross-sectional online survey. Mothers were asked about their child's behavioural difficulties, their experience of stigma, in addition to completing assessments of resilience, social support, and parental adjustment. RESULTS: Overall child behavioural and emotional difficulties, and the sub domain emotional problems, hyperactivity, and low prosocial behaviour were found to be a significant independent predictors of stigma. Resilience was associated with stigma and moderated the relationship between low prosocial behaviour and stigma. There was no evidence that social support or parental attachment acted as protective factors in the relationship between child behavioural difficulties and stigma. CONCLUSIONS: The results of the present study extend the findings of previous research by providing evidence that families of children with a range of developmental disabilities experience stigma, in particular when children show high levels of emotional problems and hyperactivity, and low levels of prosocial behaviour. The present study also provides evidence that resilience is associated with stigma and resilience-building interventions may be beneficial to reduce the negative impact of stigma.

Sleep, Anxiety, and Academic Performance: A Study of Adolescents From Public High Schools in China.

Purpose: Sleep is essential for optimal learning across the developmental pathways. This study aimed to (1) explore whether school start and end times and screen time influenced sleep disturbances in adolescents during the lockdown in China and (2) investigate if sleep disturbances at night and sleep-related impairment (daytime fatigue) influenced adolescents' academic performance and anxiety levels. Methods: Ninety-nine adolescents aged 15-17 years old were recruited from two public schools in Baishan City Jilin Province, China. An online questionnaire was distributed including questions on adolescents' demographics, screen time habits, academic performance, anxiety level, sleep disturbances, and sleep-related impairment. Results: Adolescents who started school earlier and ended school later had a greater severity of sleep disturbances and sleep-related impairment compared with students who started school later and finished earlier. Adolescents who engaged in screen time at bedtime were more likely to have a greater severity of sleep-related impairment than students who reported no screen time use at bedtime. Adolescents who had a greater severity of sleep disturbances had higher anxiety and higher academic achievements than adolescents with less sleep disturbances. Finally, 79.7% of adolescents reported their total sleep duration as <8 h. Conclusions: Adolescents are experiencing sleep disturbances to manage academic demands during COVID-19, which in turn is having a wider impact on their mental health. Many schools internationally have continued to provide online education to students, longitudinal studies on how COVID-19 has influenced adolescents sleep and mental health would be beneficial in understanding the impact of the pandemic.