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Craniofacial Collaboration UK: Developmental Outcomes in 5-Year-Old Children With Sagittal Synostosis.
ABSTRACT: The Craniofacial Collaboration UK (CC-UK) is a joint initiative that seeks to address some of the limitations of previous developmental research with this patient group by providing systematically collected, robust data from clinically and chronologically homogenous representative samples of children. The current paper outlines the developmental outcomes at the age of 5 for children who had previously undergone primary surgery for single-suture sagittal synostosis (SS). It shows broad consistencies with the previous CC-UK work, indicating that the majority of children with SS will perform within the average range compared to peers across a number of developmental, behavioral and emotional domains. However, the group mean for children with SS indicates significantly greater difficulties with fine motor skills and hyperactivity, relative to normative data. Unexpectedly, children with SS had significantly better problem solving skills. While it is reassuring that the majority of children are broadly developing in line with their unaffected peers, these small but significant differences may be early indicators of some of the subtle difficulties documented in older children with craniosynostosis. Longitudinal follow up is therefore important to understand the developmental trajectory for children with SS and identification of potentially 'at risk' sub groups within this diagnostic cohort.
The Sensitivity and Specificity of Parental Report of Concern for Identifying Language Disorder in Children With Craniosynostosis.
ABSTRACT: Many factors that may co-occur with craniosynostosis, such as oral structural anomalies, hearing impairment, visual impairment, cognitive difficulties and psychosocial factors, may predispose this population to communication difficulties. At the Oxford Craniofacial Unit, children's speech, language and communication are regularly monitored in accordance with a systematic developmental screening protocol developed by the Speech and Language Therapists in the 4 United Kingdom (UK) Highly Specialized Craniofacial Centers. In addition to routine assessments, when parents attend routine multidisciplinary clinic appointments, they are asked about their child's communication development, and whether they have any concerns.A retrospective review was undertaken of parental concerns about hearing, speech development, behavior, physical development, concentration, school and friendships as indicated by parents on the Oxford Craniofacial Unit Pre-Clinic Questionnaire. The areas of concern were then correlated with the results of a standardized, guided parent questionnaire about children's language development, (Children's Communication Checklist - 2 (CCC-2)), to determine whether parental concern alone is a reliable way of identifying whether patients require further assessment for Language Disorder associated with Craniosynostosis.Participants were parents of 89 monolingual English-speaking children with craniosynostosis (62 male; 27 female), age range four to 13 years (mean age = 8 years 7 months), receiving active care at the Oxford Craniofacial Unit (June 2017-July 2018). Results of the pre-clinic questionnaire indicated that 6% of parents had concerns about their child's communication development. Results of the CCC-2 indicated that 29/89 (32.6%) of children required further assessment for Language Disorder associated with Craniosynostosis. When language difficulties were identified on the CCC-2, only 14% (n = 4/29) parents indicated concern on the pre clinic questionnaire. Results indicated that parental concern about behavior was the most important factor in identifying language disorder (P = 0.023).Results reinforce that the pre-clinic questionnaire is useful for identifying areas of parental concern. Results also indicate that parental concern alone is not sufficient to identify language disorder, and that further, detailed assessment is warranted. The results are consistent with previously reported links between behavior and language in the general population.
A Systematic Review of the Psychosocial Adjustment of Children and Adolescents with Facial Palsy: The Impact of Moebius Syndrome.
INTRODUCTION: Facial palsy is often associated with impaired facial function and altered appearance. However, the literature with regards to the psychological adjustment of children and adolescents with facial palsy has not been systematically reviewed to date. This paper aimed to review all published research with regards to psychosocial adjustment for children and adolescents with facial palsy. METHODS: MEDLINE, CINAHL, Embase, PsychInfo and AMED databases were searched and data was extracted with regards to participant characteristics, study methodology, outcome measures used, psychosocial adjustment and study quality. RESULTS: Five studies were eligible for inclusion, all of which investigated psychosocial adjustment in participants with Moebius syndrome, a form of congenital facial palsy. Many parents reported their children to have greater social difficulties than general population norms, with difficulties potentially increasing with age. Other areas of psychosocial adjustment, including behaviour, anxiety and depression, were found to be more comparable to the general population. DISCUSSION: Children and adolescents with Moebius syndrome may experience social difficulties. However, they also demonstrate areas of resilience. Further research including individuals with facial palsy of other aetiologies is required in order to determine the psychosocial adjustment of children and adolescents with facial palsy.
The Psychosocial Adjustment of Children Born With a Cleft Lip and/or Palate: Cross-Sectional and Longitudinal Analyses
Objective: To determine the psychosocial adjustment of children born with a cleft lip and/or palate (CL/P). Design: Longitudinal analyses of psychosocial outcomes and cross-sectional comparison with published norms. Setting: Retrospective clinical audit at a UK cleft center. Participants: Data available for 1174 participants born with a CL/P at ages 5 (n = 658), 10 (n = 415), and 15 (n = 171), with longitudinal data for a subset of the sample at 5 and 10 (n = 168) and 10 and 15 (n = 49). Main Outcome Measure: Parental-report Strengths and Difficulties Questionnaire (SDQ). Results: The majority of children scored in the average range for overall adjustment. Children born with CL/P had significantly higher mean overall SDQ scores relative to normative data at ages 5 and 10. Longitudinal analysis highlighted that adjustment at age 5 was a significant predictor of adjustment at age 10. Gender was another significant predictor of adjustment at age 5 and 10, with boys reporting more problems than girls. However, effect sizes for the impact of age and gender were small. Cleft type was not a significant predictor of SDQ score at any age. Conclusions: Children aged 5 and 10 years of age born with a cleft may experience greater overall psychosocial difficulties than the general population. The domains on the SDQ on which children experience difficulty may be influenced by age and gender. Future research should focus on the specific impact of cleft-related issues, including speech, language, and hearing difficulties, on psychosocial adjustment.
Preliminary Analysis From the Craniofacial Collaboration United Kingdom Developmental Outcomes in Children With Sagittal Synostosis
The Craniofacial Collaboration United Kingdom (CC-UK) was established across the 4 Highly Specialized Craniofacial Centres (HSCCs) in the UK in 2015. This is the first wave of data to be analyzed, looking at 3-year-old children with sagittal synostosis who have had primary corrective surgery. This is a comprehensive, homogenous dataset, looking at parental measures of development and behavior. The results indicate that the majority of children are rated by their parents as falling within one standard deviation of the mean for both developmental and behavioral measures. However, there was a trend across the age groups within the sample which, although not statistically significant, indicates that more developmental difficulties may become apparent as children get older. Behavior was rated as more problematic, and the areas of greatest parental concern were Conduct (challenging or confrontational behavior) and Hyperactivity domains, where 24% of children were rated as within the clinically significant range. Although the majority of children were rated as falling within the average range, the difference in the mean between the sagittal and the normative group was significant in 5 of the 6 behavioral domains. Further research is required to examine whether these findings are stable over time and to look at the mechanism which might be driving these changes. It is anticipated that future CC-UK analysis will elucidate this more clearly.
Impact of Completing CLEFT-Q Scales That Ask About Appearance on Children and Young Adults: An International Study
Objective: To describe the impact of completing the CLEFT-Q appearance scales on patients with cleft lip and/or palate and to identify demographic and clinical characteristics and CLEFT-Q scores associated with reporting a negative impact. Design: International cross-sectional survey. Setting: Recruitment took place between October 2014 and November 2016 at 30 craniofacial clinics located in 12 countries. Patients: Aged 8 to 29 years with cleft lip and/or palate. Main Outcome Measure(s): Participants were asked 4 questions to evaluate the impact of completing the field test version of a patient-reported outcome measure (the CLEFT-Q) that included 154 items, of which 79 (51%) asked about appearance (of the face, nose, nostrils, teeth, lips, jaws, and cleft lip scar). Results: The sample included 2056 participants. Most participants liked answering the CLEFT-Q (88%) and the appearance questions (82%). After completing the appearance scales, most participants (77%) did not feel upset or unhappy about how they look, and they felt the same (67%) or better (23%) about their appearance after completing the questionnaire. Demographic and clinical variables associated with feeling unhappy/upset or worse about how they look included country of residence, female gender, more severe cleft, anticipating future cleft-specific surgeries, and reporting lower (ie, worse) scores on CLEFT-Q appearance and health-related quality-of-life scales. Conclusion: Most participants liked completing the CLEFT-Q, but a small minority reported a negative impact. When used in clinical practice, CLEFT-Q scale scores should be examined as soon as possible after completion in order that the clinical team might identify patients who might require additional support.
A qualitative study of bereaved relatives’ end of life experiences during the COVID-19 pandemic
<jats:sec><jats:title>Background:</jats:title><jats:p> Meeting the needs of relatives when a family member is dying can help facilitate better psychological adjustment in their grief. However, end of life experiences for families are likely to have been deleteriously impacted by the COVID-19 crisis. Understanding how families’ needs can be met during a global pandemic will have current/future relevance for clinical practice and policy. </jats:p></jats:sec><jats:sec><jats:title>Aim:</jats:title><jats:p> To explore relatives’ experiences and needs when a family member was dying during the COVID-19 pandemic. </jats:p></jats:sec><jats:sec><jats:title>Design:</jats:title><jats:p> Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. </jats:p></jats:sec><jats:sec><jats:title>Setting/participants:</jats:title><jats:p> A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. </jats:p></jats:sec><jats:sec><jats:title>Results:</jats:title><jats:p> In the absence of direct physical contact, it was important for families to have a clear understanding of their family member’s condition and declining health, stay connected with them in the final weeks/days of life and have the opportunity for a final contact before they died. Health and social care professionals were instrumental to providing these aspects of care, but faced practical challenges in achieving these. Results are presented within three themes: (1) entering into the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic and (3) the importance of ‘saying goodbye’ in a pandemic. </jats:p></jats:sec><jats:sec><jats:title>Conclusions:</jats:title><jats:p> Health and social care professionals can have an important role in mitigating the absence of relatives’ visits at end of life during a pandemic. Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to ‘say goodbye’. </jats:p></jats:sec>
Executive function in HIV-affected children and adolescents: a systematic review and meta-analyses.
This review aimed to determine: whether EF is affected in children and adolescents (2-24-years-old) with perinatal HIV infection, perinatal HIV exposure without infection, and behaviourally acquired HIV. A systematic review (PROSPERO number: CRD42017067813) was conducted using 11 electronic databases (01.01.1981-09.07.2019) and 8 conference websites. Primary quantitative studies with EF scores on cognitive tasks and/or behavioural report measures were included. Meta-analyses were performed by EF subtype and subpopulations compared. 1789 records were found. Sixty-one studies were included in the narrative synthesis; 32 (N = 7884 participants) were included in meta-analyses. There was a distinct pattern of reduced EF in those with perinatal HIV infection on antiretroviral therapy compared to controls: pooled effect sizes were largest for verbal and visuospatial working memory, with smaller effects on planning, inhibitory control and set-shifting. Data were limited for other HIV-affected subpopulations. Perinatal HIV infection is associated with reduced EF with varying effect sizes for the different EF subtypes.
Output planning at the input stage in visual working memory
<jats:p>Working memory serves as the buffer between past sensations and future behavior, making it vital to understand not only how we encode and retain sensory information in memory but also how we plan for its upcoming use. We ask when prospective action goals emerge alongside the encoding and retention of visual information in working memory. We show that prospective action plans do not emerge gradually during memory delays but are brought into memory early, in tandem with sensory encoding. This action encoding (i) precedes a second stage of action preparation that adapts to the time of expected memory utilization, (ii) occurs even ahead of an intervening motor task, and (iii) predicts visual memory–guided behavior several seconds later. By bringing prospective action plans into working memory at an early stage, the brain creates a dual (visual-motor) memory code that can make memories more effective and robust for serving ensuing behavior.</jats:p>
Using item response theory (IRT) to improve the efficiency of the Simple Clinical Colitis Activity Index (SCCAI) for patients with ulcerative colitis.
BACKGROUND: The SCCAI was designed to facilitate assessment of disease activity in ulcerative colitis (UC). We aimed to interrogate the metric properties of individual items of the SCCAI using item response theory (IRT) analysis, to simplify and improve its performance. METHODS: The original 9-item SCCAI was collected through TrueColours, a real-time software platform which allows remote entry and monitoring of patients with UC. Data were securely uploaded onto Dementias Platform UK Data Portal, where they were analysed in Stata 16.1 SE. A 2-parameter (2-PL) logistic IRT model was estimated to evaluate each item of the SCCAI for its informativeness (discrimination). A revised scale was generated and re-assessed following systematic removal of items. RESULTS: SCCAI data for 516 UC patients (41 years, SD = 15) treated in Oxford were examined. After initial item deletion (Erythema nodosum, Pyoderma gangrenosum), a 7-item scale was estimated. Discrimination values (information) ranged from 0.41 to 2.52 indicating selected item inefficiency with three items < 1.70 which is a suggested discriminatory value for optimal efficiency. Systematic item deletions found that a 4-item scale (bowel frequency day; bowel frequency nocturnal; urgency to defaecation; rectal bleeding) was more informative and discriminatory of trait severity (discrimination values of 1.50 to 2.78). The 4-item scale possesses higher scalability and unidimensionality, suggesting that the responses to items are either direct endorsement (patient selection by symptom) or non-endorsement of the trait (disease activity). CONCLUSION: Reduction of the SCCAI from the original 9-item scale to a 4-item scale provides optimum trait information that will minimise response burden. This new 4-item scale needs validation against other measures of disease activity such as faecal calprotectin, endoscopy and histopathology.
Comorbid mental disorders and quality of life of people with epilepsy attending primary health care clinics in rural Ethiopia.
BACKGROUND: Evidence from high-income countries demonstrates that co-morbid mental disorders in people with epilepsy adversely affect clinical and social outcomes. However, evidence from low-income countries is lacking. The objective of this study was to measure the association between co-morbid mental disorders and quality of life and functioning in people with epilepsy. METHODS: A facility-based, community ascertained cross-sectional survey was carried out in selected districts of the Gurage Zone, Southern Ethiopia. Participants were identified in the community and referred to primary health care (PHC) clinics. Those diagnosed by PHC workers were recruited. Co-morbid mental disorders were measured using a standardised, semi-structured clinical interview administered by mental health professionals. The main outcome, quality of life, was measured using the Quality of Life in Epilepsy questionnaire (QOLIE-10p). The secondary outcome, functional disability, was assessed using the 12-item World Health Organization Disability Assessment Schedule (WHODAS-2). RESULTS: The prevalence of comorbid mental disorders was 13.9%. Comorbid mental disorders were associated with poorer quality of life (Adjusted (Adj.) β -13.27; 95% CI -23.28 to-3.26) and greater disability (multiplier of WHODAS-2 score 1.62; 95% CI 1.05, 2.50) after adjusting for hypothesised confounding factors. Low or very low relative wealth (Adj. β = -12.57, 95% CI -19.94 to-5.20), higher seizure frequency (Adj.β coef. = -1.92, 95% CI -2.83 to -1.02), and poor to intermediate social support (Adj. β coef. = -9.66, 95% CI -16.51 to -2.81) were associated independently with decreased quality of life. Higher seizure frequency (multiplier of WHODAS-2 score 1.11; 95% CI 1.04, 1.19) was associated independently with functional disability. CONCLUSION: Co-morbid mental disorders were associated with poorer quality of life and impairment, independent of level of seizure control. Integrated and comprehensive psychosocial care is required for better health and social outcomes of people with epilepsy.
Onchocerca volvulus and epilepsy: A comprehensive review using the Bradford Hill criteria for causation.
BACKGROUND: The possibility that onchocerciasis may cause epilepsy has been suggested for a long time, but thus far, an etiological link has not been universally accepted. The objective of this review is to critically appraise the relationship between Onchocerca volvulus and epilepsy and subsequently apply the Bradford Hill criteria to further evaluate the likelihood of a causal association. METHODS: PubMed and gray literature published until September 15, 2020, were searched and findings from original research were synthesized. Adherence to the 9 Bradford Hill criteria in the context of onchocerciasis and epilepsy was determined to assess whether the criteria are met to strengthen the evidence base for a causal link between infection with O. volvulus and epilepsy, including the nodding syndrome. RESULTS: Onchocerciasis as a risk factor for epilepsy meets the following Bradford Hill criteria for causality: strength of the association, consistency, temporality, and biological gradient. There is weaker evidence supporting causality based on the specificity, plausibility, coherence, and analogy criteria. There is little experimental evidence. Considering the Bradford Hill criteria, available data suggest that under certain conditions (high microfilarial load, timing of infection, and perhaps genetic predisposition), onchocerciasis is likely to cause epilepsy including nodding and Nakalanga syndromes. CONCLUSION: Applying the Bradford Hill criteria suggests consistent epidemiological evidence that O. volvulus infection is a trigger of epilepsy. However, the pathophysiological mechanisms responsible for seizure induction still need to be elucidated.
Childhood determinants of past-year anxiety and depression in recently transitioned military personnel.
BACKGROUND: Anxiety and depression may hamper a smooth transition from military to civilian life and may be important predictors of longer-term health and functioning. However, it is as yet unclear to what extent they are determined by childhood factors in a recently transitioned population. METHODS: We utilised logistic regression and Generalised Structural Equation Modelling to analyse associations of ICD-10 past-year anxiety and depression with childhood trauma and disorder in a recently transitioned population using detailed interview data from the ADF (Australian Defence Force) Transition and Wellbeing Research Programme. RESULTS: Past-year anxiety (including PTSD) was prevalent (36.4%, 95% CI, 31.9-41.1) and associated with childhood anxiety (but not other types of childhood disorder), childhood interpersonal trauma (but not other childhood trauma) and adult-onset trauma. Childhood anxiety had a direct and significant association with past-year anxiety. The pathway between childhood interpersonal trauma and past-year anxiety was fully mediated by childhood anxiety. Past-year depression was less prevalent (11.3%, 95% CI, 8.7-14.5) and had no association with childhood disorder or trauma variables. LIMITATIONS: The main predictor variables utilized in this analysis were childhood experiences recalled from adulthood, thus rendering the responses vulnerable to autobiographical bias. CONCLUSIONS: Past-year anxiety was highly prevalent in the period of transition and had strong associations with childhood and military factors, suggesting predictability and potentially preventability.
Trajectories of maternal depressive symptoms from the antenatal period to 24-months postnatal follow-up: findings from the 2015 Pelotas birth cohort.
BACKGROUND: Maternal depression may be chronic and recurrent, with negative effects both on the health of mothers and children. Many studies have shown trajectories of postnatal depressive symptoms but few studies in low- and middle-income countries have evaluated the trajectories of depressive symptoms starting during pregnancy. This study aims to identify the different trajectories of depressive symptoms among mothers in the Pelotas 2015 birth cohort, from pregnancy to the second year of the child's life. METHODS: This study used data from the 2015 Pelotas Birth Cohort, a longitudinal study of all live births occurred in 2015 in Pelotas, Brazil. Maternal depressive symptoms were assessed using the Edinburgh Postnatal Depression Scale (EPDS). Mothers who completed the EPDS on at least three follow-up visits beginning to the antenatal follow-up visit were included in the analyses. The trajectory of maternal depressive symptoms was estimated through group-based trajectory modeling. RESULTS: A total of 3040 women were included in the present analysis. We identified five groups of maternal depressive symptoms trajectories, with 23.4% of the mothers presenting persistent depressive symptoms and 3.9% showing chronic high depressive symptoms throughout the study period. The probability of having persistent depressive symptoms increased among mothers with greater socioeconomic vulnerability. CONCLUSIONS: This study shown the persistence of maternal depressive symptoms since pregnancy until 2 years postnatal. Additionally, alongside the known risk factors, pre-gestational depression and antenatal depressive symptoms are important risk factors for the persistence and severity of depressive symptoms. These findings support the need to provide mental health evaluation and care for women from pregnancy to the late postnatal period.
Female infants are more susceptible to the effects of maternal antenatal depression; findings from the Pelotas (Brazil) Birth Cohort Study.
BACKGROUND: We utilised data from the 2015 Pelotas Birth Cohort, a large prospective cohort in southern Brazil, to examine the association of moderate and severe antenatal depression with child birth outcomes and explore interactions with sociodemographic characteristics. METHODS: Data was available for n = 3046 participants and their infants. We measured antenatal depression using the Edinburgh Postnatal Depression Scale (EPDS, ≥13 for moderate and ≥17 for severe depression). Outcome measures included gestational age, birth weight, length and head circumference, using the Intergrowth-21st standards. We controlled for known confounders including obstetric risk. RESULTS: We did not find differences in childbirth outcomes by maternal depression status for participants with at least moderate depression, although there was an increased risk for female offspring to be small for gestational age (SGA, OR 2.33[1.37,3.97]). For severe depression (EPDS≥17) we found an increased risk for lower APGAR scores (OR 1.63[1.02,2.60]) and being SGA (OR 1.77[1.06,2.97], with an increased risk for female offspring in particular to be in lower weight centiles (-10.71 [-16.83,-4.60]), to be SGA (OR 3.74[1.89, 7.44]) and in the lower 10th centile for length (OR 2.19[1.25,3.84]). LIMITATIONS: include the use of a maternal report questionnaire to ascertain depressive symptoms. CONCLUSIONS: In this recent large longitudinal cohort in Brazil we did not find independent effects of depression on adverse birth outcomes or interactions with sociodemographic characteristics. We found an increased risk of being SGA for female offspring of women with moderate and severe depression, in line with other research suggesting females may be more susceptible to antenatal disturbances. FUNDING: This work was supported by the Wellcome Trust, United Kingdom (095582), the Brazilian National Research Council (CNPq) and the Coordination for the Improvement of Higher Education Personnel (CAPES). EN was supported by the UK Economic and Social Research Council GCRF Postdoctoral Fellowship (ES/P009794/1).
Timing of onset of lithium relapse prevention in bipolar disorder: evidence from randomised trials.
Lithium is widely prescribed, but the timing of key effects remains uncertain. The timing of onset of its relapse prevention effects is clarified by placebo-controlled randomised trials (3 studies, n = 1120). Lithium reduced relapse into any mood episode over the first 2 weeks of treatment (hazard ratio 0.40, 95% CI 0.16-0.97). Fewer manic relapses were evident within the first 4 weeks, however, early effects on depressive relapse were not demonstrated. There is an early onset of lithium relapse prevention effects in bipolar disorder, particularly against manic relapse. Full effects against depressive relapse may develop over a longer period.Declaration of interestM.J.T. reports personal fees from Sunovion, Otsuka, Lundbeck, outside the submitted work.
Glyceryl trinitrate in first-episode psychosis unmedicated with antipsychotics: A randomised controlled pilot study.
BACKGROUND: There is a pressing need for new classes of treatment for psychosis. A key therapeutic target for novel compounds is the NMDA receptor, which may be modulated by nitric oxide donors such as sodium nitroprusside (SNP). Recent studies of SNP in patients with psychosis have mixed results, and the drug has to be administered intravenously. Glyceryl trinitrate (GTN) is a well-established cardiovascular medicine that is also a nitric oxide donor, and can be given orally. AIMS: We explored the safety and potential effects of GTN in unmedicated patients with a first episode of psychosis. METHODS: This was a single-centre, randomised, double-blind, placebo-controlled trial from December 2016 to April 2019 (ClinicalTrials.gov identifier: NCT02906553). Patients received 3 × sprays of GTN or placebo for three consecutive days, and were re-assessed on Days 1, 2, 3 and 7. The primary outcome was cognition (Jumping to Conclusions task), secondary outcomes were symptoms (Positive and Negative Syndrome Scale (PANSS)), verbal memory (Hopkins Verbal Learning task), and mood (Bond-Lader Visual Analogue Scales). RESULTS: Nineteen patients were randomised, and 13 participants were included in the analyses. Compared with placebo, GTN was well tolerated, but was not associated with significant effects on cognition, symptoms, or mood. Bayesian statistics indicate that our results were 2× more likely under the null hypothesis than the alternative hypothesis, providing anecdotal evidence that GTN does not improve psychotic symptoms. CONCLUSIONS: We found no indication of an effect of GTN on symptoms of psychosis or cognition.