The Craniofacial Collaboration UK: Developmental Outcomes in 7- and 10-Year-Old Children With Metopic Synostosis.

The Craniofacial Collaboration (CC-UK) is a shared initiative across the Psychology teams attached to 4 highly specialized craniofacial centers in the United Kingdom. The CC-UK aims to address key limitations in the existing craniofacial literature by analyzing data for homogenous samples of children with craniosynostosis. This article presents the fifth wave of CC-UK data collection, focused on 7- and 10-year olds who have undergone primary corrective surgery for metopic synostosis (MS). Data for children with sagittal synostosis and MS have previously been presented at 3 and 5 years. This paper continues to build on this with consideration to older age groups, presenting the first CC-UK analysis of cognitive assessment data using the Wechsler Abbreviated Scale of Intelligence-Second Edition. Results show that the majority of children with MS fall within the average ranges across behavioral and neurodevelopmental domains. However, several domains indicated a trend of heightened concern when compared with normative data, particularly for parent-reported outcomes, suggesting that there may be some subtle difficulties for children with MS. Consideration of how these findings compare with that of previous CC-UK analyses is explored. Further, implications for clinical practice and future research are considered, with the need for longitudinal analyses, as well as data from multiple perspectives (eg, school, parents, and self) at older age points to establish patterns over time. Through collaboration across the highly specialized craniofacial centers, the CC-UK hopes to work toward this goal moving forward.

Exploring the experiences of healthcare professionals in South Africa and Uganda around communicating with children about life-threatening conditions: a workshop-based qualitative study to inform the adaptation of communication frameworks for use in these settings.

OBJECTIVES: This study aimed to explore how published communication frameworks could be amended to ensure applicability and cultural appropriateness for professionals to support family-centred conversations by investigating' healthcare professionals' (1) experiences of providing support to families when a caregiver or a dependent child (<18 years old) has a life-threatening condition, (2) perceived challenges for caregivers and healthcare professionals in communicating with children about illness, (3) perceptions of how clinicians could be equipped to facilitate conversations between caregivers and children about an adult or the child's own life-threatening condition and (4) suggestions for amendments to previously published guidelines to ensure cultural relevance in South Africa and Uganda. DESIGN: A qualitative study involving two 2-day workshops with embedded focus group discussions, break out rooms and consensus discussions. SETTING: Health and social care and third sector organisations in South Africa and Uganda. PARTICIPANTS: Thirty-two professionals providing care to families affected by life-threatening conditions in South Africa or Uganda who were aged 18 years or older and able to converse in English. RESULTS: Participants identified obstacles to having conversations with caregivers about children and to telling children about serious illness during consultations. These included patients' beliefs about illness, medicine and death, language barriers between families and the healthcare team, and emotional and practical challenges for professionals in having these conversations. Culturally appropriate adaptations were made to previously published communication frameworks for professionals to support family-centred conversations. CONCLUSIONS: Culturally sensitive communication frameworks could help healthcare professionals to talk with families about what children need to know when they or a caregiver have a serious illness. More broadly, effective communication could be facilitated by promoting healthcare professionals' and communities' understanding of the benefits of telling children about illness within the family. Together these strategies may mitigate the psychological impact of global disease on children and their families.

Obstacles and facilitators to communicating with children about their parents' mental illness: a qualitative study in a sub-district of Mpumalanga, South Africa.

BACKGROUND: Given that common mental disorders are one of the leading causes of disease burden worldwide, it is likely that many children are growing up with a parent or other adult within their family who has anxiety or depression. Parents with a mental illness may not consider it appropriate to discuss their illness with their child, and consequently an absence of communication may lead to stigmatization, shame, misunderstanding their parents' symptoms, and even blaming themselves. There is a scarcity of research exploring the experiences and perceptions of healthcare professionals about communication with children of parents with mental illness in low-resource and African contexts. METHODS: A qualitative study using semi-structured interviews with healthcare professionals (n = 15) was conducted within the Bushbuckridge sub-district of Mpumalanga Province, South Africa. Data were analysed using Thematic Analysis. RESULTS: Four themes were identified relating to the obstacles around communication with children. These included: (1) finding an appropriate language to describe mental illness, as well as the prevailing cultural explanations of mental illness (2) the stigma associated with mental illness (3) the perceived role of children in society and (4) mental health services and staff skills. Two themes that addressed facilitators of communication about parental mental illness were identified: (1) the potential to increase mental health awareness amongst the broader community through social media, the internet, and general psychoeducation (2) healthcare professionals' concerns for the wellbeing and future mental health of patients' children, as well as their hopes for increased mental health awareness amongst future generations. CONCLUSIONS: This study provides insight into healthcare professionals' attitudes and perceptions about talking to patients and families within their community about mental illness. The results provide recommendations about possible ways to promote sharing information about a parent's mental illness with children at an individual and community level. Future research should focus on the collaborative creation of culturally sensitive psychoeducational resources and evidence-based guidelines. This must be supported by systemic and organisational change in order for professionals to successfully facilitate conversations with patients who are parents, and their children.

The Craniofacial Collaboration UK: Developmental Outcomes in 5-Year-Old Children With Metopic Synostosis.

The Craniofacial Collaboration (CC-UK) was setup in 2015 as a joint initiative between the Psychology teams attached to the 4 highly specialized craniofacial centers in the United Kingdom. The CC-UK aims to address key limitations in the existing craniofacial literature by applying strict exclusion criteria and collating clinical data on a homogenous sample of children. This article reports the fourth wave of data collection from the CC-UK, with the analysis of developmental and behavioral outcomes for children with metopic synostosis at 5 years old. Previous data for sagittal synostosis at 3 and 5 years, and metopic synostosis at 3 years, have been presented. This paper offers the first analysis of developmental and behavioral parent-report measures at school age for metopic synostosis. All children in the current data set had primary corrective surgery. Findings highlight similar patterns to that of previous research among children with single-suture craniosynostosis, as well as earlier CC-UK analyses, with the majority falling within 1 standard deviation of the normative mean. However, differences across key behavioral and emotional domains, with some areas reporting heightened concerns compared with those detected among sagittal groups, may suggest that subtle differences between individual diagnostic groups are present. This further highlights the importance of utilizing homogenous samples within the field of craniofacial research. To further build upon this work, and to provide a greater understanding of how these difficulties and concerns may develop, or diminish, over time, further consideration to longitudinal outcomes is needed for individual diagnostic groups. Through this collaboration, the authors seek to achieve this goal in their future work.

Exploring healthcare professionals' beliefs, experiences and opinions of family-centred conversations when a parent has a serious illness: A qualitative study.

This study explored healthcare professionals' perceived role in talking to adult patients about sharing their diagnosis with children. Semi-structured interviews were conducted to explore healthcare professionals' beliefs about how families could and should be supported when a parent has a serious illness. Participants were 24 healthcare professionals working in primary, secondary and tertiary NHS services in the UK with adult patients diagnosed with a serious illness. Data were analysed thematically. Many healthcare professionals reported systems to identify patients' family relationships, but this information was rarely used to initiate conversations on what and how to talk to children. It was frequently assumed that someone else in the healthcare system was supporting patients with family communication. Others reported there were more urgent priorities for the consultation or considered that talking to children was a private family matter. However, several professionals did undertake these conversations, viewing this as a central part of their role. Some healthcare professionals felt they had inadequate skills or confidence to raise talking to children with their patients and indicated a need for specific training to address this. The results highlight the importance of systematically documenting patients' relationships with children so that this information can be used to inform ongoing discussions with the healthcare team about what children have been told. Patients consistently report wanting support about how to talk to children and the benefits of effective communication are well documented. Dissemination of this evidence could encourage professionals across all specialities to include family-centred communication in routine patient care. Training resources are needed so that staff feel empowered and equipped to raise these sensitive subjects with their patients.

Challenges and opportunities for perinatal health services in the COVID-19 pandemic: a qualitative study with perinatal healthcare professionals.

BACKGROUND: Perinatal healthcare professionals (PHCPs) provide essential support to all parents in the perinatal period, including young parents aged 16-24, who are at an increased risk of morbidity and mortality. Little is known about the impact of COVID-19 restrictions on the provision of perinatal services, and on perinatal healthcare professionals, caring for young parents in the UK. METHODS: A UK based qualitative study using semi-structured interviews with perinatal healthcare professionals (n = 17). Data were analysed using thematic analysis. RESULTS: Two themes were identified describing perinatal healthcare professionals' perceptions of providing care to young parents during the pandemic. Perinatal healthcare professionals perceived that young parents' needs were amplified by the pandemic and that pandemic-related changes to the service, such as the use of telemedicine to replace face-to-face interactions, did not manage to successfully mitigate the increased feelings of anxiety and isolation experienced by young parents. Concerns were raised by perinatal healthcare professionals that these changes reduced young parent's access to vital support for themselves and their child and may contribute to exacerbating pre-existing inequalities. CONCLUSIONS: This study provides insight into the impact of the COVID-19 pandemic on the provision of perinatal care to young parents. Perinatal mental health professionals felt these negative impacts could be overcome by using a blended approach of technology and face-to-face interactions allowing regular contact with young parents and facilitating the exchange of vital information, while maintaining access to opportunities for social interactions with other parents. Findings from this study could be used to future-proof services against further COVID-19 restrictions.

Cognitive, Behavioural, Speech, Language and Developmental Outcomes Associated with Pathogenic Variants in the ERF Gene.

ABSTRACT: Pathogenic variants of the ERF gene were previously associated with craniosynostosis, craniofacial dysmorphism and Chiari malformation. This study investigates cognitive, behavioural, speech, language, and developmental outcomes in the first 5 children identified at the Oxford Craniofacial Unit as having ERF- related craniosynostosis, together with three of their carrier parents.There were no consistent findings related to overall intelligence. However, a pattern of cognitive difficulties is described, which includes poor attention, impulsivity and difficulties with functional fine motor skills, such as handwriting. A high frequency of speech, language and communication difficulties was evident, which was most often related to early language difficulties, speech sound difficulties, hyponasal resonance and concern regarding social communication skills and emotional immaturity.It was common for these children to have needed input from ear, nose and throat services. Problems with tonsils and/or adenoids and/ or fluctuating conductive hearing loss were found which may be contributors to early speech, language and communication difficulties.The authors make recommendations regarding the need for formal assessment of a range of developmental aspects upon diagnosis of a pathogenic variant in the ERF gene. The aim of this report is to give clinical guidance to anyone who may have care of patients with the ERF -related mutation.

Young parents' experiences of pregnancy and parenting during the COVID-19 pandemic: a qualitative study in the United Kingdom.

Young parents (aged 16-24 years) in the perinatal period are at an increased risk of poor mental health especially during the COVID-19 pandemic, due to multiple risk factors including social and economic instability. COVID-19 related restrictions had profound implications for the delivery of perinatal care services and other support structures for young parents. Investigating young parents' experiences during the pandemic, including their perceived challenges and needs, is important to inform good practice and provide appropriate support for young parents.Qualitative interviews were conducted with young parents (n = 21) during the COVID-19 pandemic in the United Kingdom from February - May 2021. Data were analysed using thematic analysis.Three key themes were identified to describe parents' experiences during the COVID-19 pandemic. Parents reported specific COVID-19 related anxieties and stressors, including worries around contracting the virus and increased feelings of distress due to uncertainty created by the implications of the pandemic. Parents described feeling alone both at home and during antenatal appointments and highlighted the absence of social support as a major area of concern. Parents also felt their perinatal care had been disrupted by the pandemic and experienced difficulties accessing care online or over the phone.This study highlights the potential impact of the COVID-19 pandemic on young parents, including their mental wellbeing and the perinatal support they were able to access. Insights from this study can inform the support and services offered to families going forward. Specifically, the findings emphasise the importance of (a) supporting both parents during perinatal appointments, (b) providing parents with mental health support early on and (c) finding ways to facilitate communication pathways between professionals and parents.

The Craniofacial Collaboration UK: Developmental Outcomes in 3-Year-Old Children With Metopic Synostosis.

ABSTRACT: The Craniofacial Collaboration UK (CC-UK) has been established across the 4 highly specialized craniofacial centers in the UK since 2015. This joint collective aims to address the current limitations within developmental craniofacial research, using robust clinical data from a homogenous sample of children. This paper presents the third wave of findings from the CC-UK, with consideration to developmental and behavioral parent-report measures. Whilst previous data for sagittal synostosis have been presented, this article summarizes the analysis of these outcomes for children with metopic synostosis (MS) at 3 years who have undergone primary corrective surgery. Results highlight similar patterns to that of earlier CC-UK work, with the majority of children falling within 1 standard deviation of the population normative means across all measures. However, statistically significant difficulties were found between group means for children with MS on various developmental and behavioral domains. Prosocial skills and peer difficulties were reported as the greatest areas of behavioral concern for parents, with prosocial skills found to be below the level expected for their chronological age. In order to further understand the developmental trajectory of children with MS, longitudinal examination of individual diagnostic and specific age groups with single-suture craniosynostosis is crucial. The continuation of the CC-UK provides an opportunity to attain this goal.

Conversations About Children When an Important Adult Is at End of Life: An Audit.

PURPOSE: Health and social care professionals report it challenging to have conversations with families when an important adult in the life of a child is at end of life, often feeling this aspect of care is the responsibility of other colleagues. This study aimed to understand professionals' perceived role in family-centered conversations as part of routine care at end of life, and how to promote this element of care in clinical practice. METHODS: An audit was completed with 116 professionals who work in palliative care including doctors and nurses that attended a 2-day virtual congress. RESULTS: Professionals (73.2%) felt confident about starting a conversation with adult patients at end of life about important children. However, enquiring about relationships with children was largely dependent on the age of the patient. 64.7% of respondents reported signposting families to websites and services that provide family support. Most professionals (76.7%) wanted training to equip them with the skills and confidence to having family-centered conversations at end of life, with videos demonstrating how to provide these elements of care the most preferred option. CONCLUSIONS: Short training resources should be developed to equip professionals with the necessary skills toward having conversations about children with patients and relatives in clinical appointments. There is a need for professionals to ask every patient about important relationships with children.

Psychosocial Impact of Coronal Access Scars in Craniosynostosis Procedures on Patients and Their Families.

ABSTRACT: The coronal incision is the mainstay for access in craniosynostosis surgery. Scarring is a common concern of parents whose children are offered an open procedure. To the author's knowledge, there are no previous studies looking at the psychosocial impact of scarring from coronal access incisions for craniosynostosis procedures. The author's study focused on patients undergoing procedures for nonsyndromic single-suture craniosynostosis.This study comprised 3 parts: worldwide survey regarding coronal access incisions for craniosynostosis surgery, questionnaire to determine the psychosocial impact of the scars on patients and their parents, and measurement of postoperative scars in craniosynostosis patients.Survey responses from 46 craniofacial centers worldwide revealed a zig-zag was the most commonly utilized incision. Seventy-two percent of survey responses reported problems with postoperative stretching of the scar; only 20% of centers reported formal data collection of whether families were affected by this.Psychology questionnaires revealed that the majority of patients and their parents were not bothered by the zig-zag coronal scars. Patient felt the scars were less noticeable than the parents. Parent perceptions improved with age and time postsurgery.Coronal access scars following craniosynostosis surgery appear to stretch more in the supra-auricular region compared with the midline.These findings are useful for the craniofacial multidisciplinary team to inform parents contemplating surgery and who may be concerned about the impact of the scar in the future.

Parent and Patient Reported Outcomes for Head Shape in Children Undergoing Surgery for Single Suture Synostosis.

ABSTRACT: Assessing outcomes following surgery for single suture craniosynostosis is important to ensure minimum standards are being met, but also to compare results using different surgical techniques and treatment protocols. What constitutes an "outcome" and how this is measured remains a challenge, particularly when assessment should include consideration of aesthetic, functional, and psychological domains.The Oxford Craniofacial Unit has initiated routine collection of parents' and patients' ratings of 2 factors that are closely associated with psychological adjustment; how noticeable the child's headshape is and how much this bothers the parent and/or child. A brief Surgical Outcome Questionnaire is completed by parents and children (over 7 years) at their outpatient appointment; parents are also asked to rate the extent to which they feel surgery made a difference to their child's headshape.Data are presented for 519 parents and 248 children with single suture craniosynostosis who attended the Oxford Craniofacial Unit in 2018 and 2019; this represents over 80% of patients seen in the clinic indicating the questionnaire is acceptable for families and the potential for rapid, relevant data on a continuous basis. Analysis of the data is presented to demonstrate the utility of the Surgical Outcome Questionnaire in exploring the views of both parents and patients of the noticeability and level of concern about the child's headshape for different age groups and diagnoses.The Surgical Outcome Questionnaire provides a novel method of collecting routine data for patients across their craniofacial care pathway, using variables which are relevant and meaningful for patients and parents.

Experiences of preparing children for a death of an important adult during the COVID-19 pandemic: a mixed methods study.

OBJECTIVE: The objectives of this study were to investigate how families prepared children for the death of a significant adult, and how health and social care professionals provided psychosocial support to families about a relative's death during the COVID-19 pandemic. DESIGN/SETTING: A mixed methods design; an observational survey with health and social care professionals and relatives bereaved during the COVID-19 pandemic in the UK, and in-depth interviews with bereaved relatives and professionals were conducted. Data were analysed thematically. PARTICIPANTS: A total of 623 participants completed the survey and interviews were conducted with 19 bereaved relatives and 16 professionals. RESULTS: Many children were not prepared for a death of an important adult during the pandemic. Obstacles to preparing children included families' lack of understanding about their relative's declining health; parental belief that not telling children was protecting them from becoming upset; and parents' uncertainty about how best to prepare their children for the death. Only 10.2% (n=11) of relatives reported professionals asked them about their deceased relative's relationships with children. This contrasts with 68.5% (n=72) of professionals who reported that the healthcare team asked about patient's relationships with children. Professionals did not provide families with psychosocial support to facilitate preparation, and resources were less available or inappropriate for families during the pandemic. Three themes were identified: (1) obstacles to telling children a significant adult is going to die, (2) professionals' role in helping families to prepare children for the death of a significant adult during the pandemic, and (3) how families prepare children for the death of a significant adult. CONCLUSIONS: Professionals need to: provide clear and honest communication about a poor prognosis; start a conversation with families about the dying patient's significant relationships with children; and reassure families that telling children someone close to them is dying is beneficial for their longer term psychological adjustment.

Clinical signs, interventions, and treatment course of three different treatment protocols in patients with Crouzon syndrome with acanthosis nigricans.

OBJECTIVE: Crouzon syndrome with acanthosis nigricans (CAN) is a rare and clinically complex subtype of Crouzon syndrome. At three craniofacial centers, this multicenter study was undertaken to assess clinical signs in relation to the required interventions and treatment course in patients with CAN. METHODS: A retrospective cohort study of CAN was performed to obtain information about the clinical treatment course of these patients. Three centers participated: Erasmus Medical Centre, Rotterdam, the Netherlands; John Radcliffe Hospital, Oxford, United Kingdom; and Hôpital Necker-Enfants Malades, Paris, France. RESULTS: Nineteen patients (5 males, 14 females) were included in the study. All children were operated on, with a mean of 2.2 surgeries per patient (range 1-6). Overall, the following procedures were performed: 23 vault expansions, 10 monobloc corrections, 6 midface surgeries, 11 foramen magnum decompressions, 29 CSF-diverting surgeries, 23 shunt-related interventions, and 6 endoscopic third ventriculostomies, 3 of which subsequently required a shunt. CONCLUSIONS: This study demonstrates that patients with the mutation c.1172C>A (p.Ala391Glu) in the FGFR3 gene have a severe disease trajectory, requiring multiple surgical procedures. The timing and order of interventions have changed among patients and centers. It was not possible to differentiate the effect of a more severe clinical presentation from the effect of treatment order on outcome.

Are public health measures and individualised care compatible in the face of a pandemic? A national observational study of bereaved relatives' experiences during the COVID-19 pandemic.

BACKGROUND: COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families. AIM: To explore bereaved relatives' experiences of quality of care and family support provided during the last days of life; to identify the impact of factors associated with perceived support. DESIGN: A national, observational, open online survey was developed and disseminated via social media, public fora and professional networks (June-September 2020). Validated instruments and purposively designed questions assessed experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses. PARTICIPANTS: Individuals (⩾18 years) who had experienced the death of a relative/friend (all care settings) within the United Kingdome during the COVID-19 pandemic. RESULTS: Respondents (n = 278, mean 53.4 years) tended to be female (n = 216, 78%); over half were 'son/daughter' (174, 62.6%) to the deceased. Deceased individuals (mean 81.6 years) most frequently died in their 'usual place of care' (n = 192, 69.3%). Analysis established five conceptual themes affecting individualised care: (1) public health restrictions compounding the distress of 'not knowing'; (2) disparate views about support from doctors and nurses; (3) challenges in communication and level of preparedness for the death; (4) delivery of compassionate care; (5) emotional needs and potential impact on grief. Male respondents (OR 2.9, p = 0.03) and those able to visit (OR 2.2, p = 0.04) were independently associated with good perceptions of family support. CONCLUSION: Despite public health restrictions, individualised care can be enabled by proactive, informative communication; recognising dying in a timely manner and facilitating the ability to be present before death.

Investigating the presence of peer bias against ptosis in young children.

PURPOSE: To investigate the presence of peer bias directed at young children aged 3-6 years of age and the age at which this bias emerges. METHODS: Children (3-6 years) completed an individual testing session involving two tasks: (1) a paired photograph task examined the effect of the appearance of ptosis on children's preferences in two different social situations (toy sharing and birthday party); (2) a ranking task investigated whether different grades of ptosis are evaluated differently by children of different ages. RESULTS: A total of 217 children were included. The paired photograph task showed that with increasing age, subjects were less likely to invite children with ptosis to share a toy or attend their birthday party. Three-year-olds did not show a bias against peers with ptosis; however, 4- to 6-year-olds did chose significantly fewer children with an apparent ptosis across both social situations. The ranking task highlighted that 6-year-olds viewed a grade 3 ptosis significantly more negatively than 3- and 4-year-olds; however, there was no effect of age on the rankings given to other grades of ptosis. CONCLUSIONS: Bias against ptosis emerges at about 4 years of age and is still evident at 6 years.

Health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic: A qualitative study.

BACKGROUND: Health and social care professionals' ability to address the needs of patients and their relatives at end of life is likely to have been impacted by the COVID-19 pandemic. AIM: To explore health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic to help inform current/future clinical practice and policy. DESIGN: A qualitative interview study. Data were analysed using thematic analysis. SETTING/PARTICIPANTS: Sixteen health and social care professionals working across a range of clinical settings in supporting dying patients during the first wave (March-June 2020) of the COVID-19 pandemic in the United Kingdom. RESULTS: Participants reported emotional and practical challenges to providing end of life care during the pandemic, including increases in patient numbers, reduced staffing levels and relying on virtual platforms for sensitive, emotive conversations with relatives. Participants were central to promoting connections between patients and their families at end of life and creating opportunities for a final contact before the death. However, the provision of support varied as a consequence of the pressures of the pandemic. Results are discussed under two themes: (1) challenges and facilitators to providing end of life care, and (2) support needs of relatives when a family member was dying during the COVID-19 pandemic. CONCLUSION: There is a need for flexible visiting arrangements at end of life during a pandemic. A systems-level approach is necessary to promote the wellbeing of health and social care professionals providing end of life care during and after a pandemic.

Neurodevelopmental, Cognitive, and Psychosocial Outcomes for Individuals With Pathogenic Variants in the TCF12 Gene and Associated Craniosynostosis.

ABSTRACT: Heterozygous mutations in the TCF12 gene were discovered in 2013 as a cause of craniosynostosis (CS). However, limited information regarding the behavioral phenotypic profile is available. Here the authors provide the first detailed study of the neurodevelopmental, cognitive, and psychosocial outcomes for patients with a pathogenic TCF12 variant and associated CS.A clinical casenote audit was conducted at the 4 UK highly specialized craniofacial centers. A total of 35 patients aged 18 months to 10 years with an identified TCF12 pathogenic variant and CS (bicoronal CS = 45.7%, unicoronal CS = 40.0%, multisuture = 14.3%) were included. Standardized screening and/or assessment of full-scale intelligence quotient, social communication, development, behavior, and self-concept were conducted.In the majority of cases, outcomes were consistent with age-related expectations. About 75% of patients demonstrated no delay across any early developmental domain, while 84.6% demonstrated full-scale intelligence quotient scores within 1 standard deviation of the population mean. Significant behavioral difficulties were demonstrated by parent reporters in 26.3% to 42.1% of cases (dependent upon domain). Clinically elevated social communication profiles were present in (41.7%) of parent-reported cases. Levels of self-concept (at age 10) were consistent with age-related normative data.Most patients with a TCF12 pathogenic variant had a mild behavioral and cognitive phenotype, although they may be at a slightly increased risk of social communication difficulties and psychosocial issues. Although not measured statistically, there were no clear associations between surgical history and cognitive, behavioral, or psychosocial outcomes. This paper highlights the need for robust integrated developmental assessment of all CS patients, particularly those with an identified syndrome.

A qualitative study of bereaved relatives' end of life experiences during the COVID-19 pandemic.

BACKGROUND: 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. AIM: To explore relatives' experiences and needs when a family member was dying during the COVID-19 pandemic. DESIGN: Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. SETTING/PARTICIPANTS: A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. RESULTS: 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. CONCLUSIONS: 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'.

Characterizing the Qatar advanced-phase SARS-CoV-2 epidemic.

The overarching objective of this study was to provide the descriptive epidemiology of the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) epidemic in Qatar by addressing specific research questions through a series of national epidemiologic studies. Sources of data were the centralized and standardized national databases for SARS-CoV-2 infection. By July 10, 2020, 397,577 individuals had been tested for SARS-CoV-2 using polymerase-chain-reaction (PCR), of whom 110,986 were positive, a positivity cumulative rate of 27.9% (95% CI 27.8-28.1%). As of July 5, case severity rate, based on World Health Organization (WHO) severity classification, was 3.4% and case fatality rate was 1.4 per 1,000 persons. Age was by far the strongest predictor of severe, critical, or fatal infection. PCR positivity of nasopharyngeal/oropharyngeal swabs in a national community survey (May 6-7) including 1,307 participants was 14.9% (95% CI 11.5-19.0%); 58.5% of those testing positive were asymptomatic. Across 448 ad-hoc testing campaigns in workplaces and residential areas including 26,715 individuals, pooled mean PCR positivity was 15.6% (95% CI 13.7-17.7%). SARS-CoV-2 antibody prevalence was 24.0% (95% CI 23.3-24.6%) in 32,970 residual clinical blood specimens. Antibody prevalence was only 47.3% (95% CI 46.2-48.5%) in those who had at least one PCR positive result, but 91.3% (95% CI 89.5-92.9%) among those who were PCR positive > 3 weeks before serology testing. Qatar has experienced a large SARS-CoV-2 epidemic that is rapidly declining, apparently due to growing immunity levels in the population.