Going home after infant cardiac surgery: a UK qualitative study

National Institute for Health Research Health Services and Delivery Research programme (Project No: 10/2002/29)

'Everyday memory' impairments in autism spectrum disorders

‘Everyday memory’ is conceptualised as memory within the context of day-to-day life and, despite its functional relevance, has been little studied in individuals with autism spectrum disorders (ASDs). In the first study of its kind, 94 adolescents with an ASD and 55 without an ASD completed measures of everyday memory from the Rivermead Behavioural Memory Test (RBMT) and a standard word recall task (Children’s Auditory Verbal Learning Test-2: CAVLT-2). The ASD group showed significant impairments on the RBMT, including in prospective memory, alongside impaired performance on the CAVLT-2. Social and communication ability was significantly associated with prospective remembering in an everyday memory context but not with the CAVLT-2. The complex nature of everyday memory and its relevance to ASD is discussed

Ethnic and socioeconomic variation in incidence of congenital heart defects

Introduction: Ethnic differences in the birth prevalence of congenital heart defects (CHDs) have been reported; however, studies of the contemporary UK population are lacking. We investigated ethnic variations in incidence of serious CHDs requiring cardiac intervention before 1 year of age. Methods: All infants who had a cardiac intervention in England and Wales between 1 January 2005 and 31 December 2010 were identified in the national congenital heart disease surgical audit and matched with paediatric intensive care admission records to create linked individual child records. Agreement in reporting of ethnic group by each audit was evaluated. For infants born 1 January 2006 to 31 December 2009, we calculated incidence rate ratios (IRRs) for CHDs by ethnicity and investigated age at intervention, antenatal diagnosis and area deprivation. Results: We identified 5350 infants (2940 (55.0%) boys). Overall CHD incidence was significantly higher in Asian and Black ethnic groups compared with the White reference population (incidence rate ratios (IRR) (95% CIs): Asian 1.5 (1.4 to 1.7); Black 1.4 (1.3 to 1.6)); incidence of specific CHDs varied by ethnicity. No significant differences in age at intervention or antenatal diagnosis rates were identified but affected children from non-White ethnic groups were more likely to be living in deprived areas than White children. Conclusions: Significant ethnic variations exist in the incidence of CHDs, including for specific defects with high infant mortality. It is essential that healthcare provision mitigates ethnic disparity, including through timely identification of CHDs at screening, supporting parental choice and effective interventions. Future research should explore the factors underlying ethnic variation and impact on longer-term outcomes

Parents’ Experiences of Caring for Their Child at the Time of Discharge After Cardiac Surgery and During the Postdischarge Period: Qualitative Study Using an Online Forum

Background: Congenital heart disease (CHD) is the most common class of birth defects, which encompasses a broad spectrum of severity ranging from relatively minor to extremely complex. Improvements in surgery and intensive care have resulted in an increasing number of infants with the most complex lesions surviving after surgery until the time of discharge from the hospital, but there remain concerns about out-of-hospital mortality, variability in how services are provided at the time of discharge and beyond, and difficulties experienced by some families in accessing care. Objective: As part of a mixed-methods program of research, this study aimed to elicit parental experiences of caring for a child with CHD after hospital discharge following a cardiac surgery and collect information to inform interviews for a subsequent stage of the project. Methods: A closed online discussion group was set up via the main Facebook page of the Children’s Heart Federation (CHF), a national charity offering support to children with heart disease and their families. The discussion group was advertised through the charity’s webpage, and interested participants were directed to the charity’s Facebook page from where they could access the closed Facebook group and respond to questions posted. The CHF moderated the forum, and the research team provided questions to be posted on the forum. Responses were collated into a single transcript and subjected to thematic analysis. Results: The forum was open for 4 months, and 91 participants (mean age 35 years, range 23-58 years, 89 females, 89 parents, and 2 grandparents) submitted demographic information and were given access to the closed forum group. A common experience of isolation emerged from the data, with descriptions of how that isolation was experienced (physical, social, knowledge) and its psychological impact, together with the factors that made it worse or better. Woven through this theme was the notion that parents developed expertise over time. Conclusions: The use of an online forum provided a means for eliciting data from a large number of parents regarding their experiences of caring for their child after hospital discharge following cardiac surgery. Parents engaged with the forum and were able to articulate what went well and what went less well, together with sharing their stories and supporting each other through doing so. Some parents clearly found participating in the forum a positive experience in itself, demonstrating the potential of social media as a mechanism for providing support and reducing isolation. Information gained from the forum was used to shape questions for interviews with parents in a subsequent phase of the study. Furthermore, the themes identified in the online forum have contributed to identifying ways of improving the provision of care and support for parents of high-risk babies following discharge after cardiac surgery.</p

The association between theory of mind, executive function and the symptoms of autism spectrum disorder

It has been strongly argued that atypical cognitive processes in autism spectrum disorder (ASD) contribute to the expression of behavioural symptoms. Comprehensive investigation of these claims has been limited by small and unrepresentative sample sizes and the absence of wide-ranging task batteries. The current study investigated the cognitive abilities of 100 adolescents with ASD (mean age = 15 years 6 months), using 10 tasks to measure the domains of theory of mind (ToM) and executive function (EF). We used structural equation modelling as a statistically robust way of exploring the associations between cognition and parent-reported measures of social communication and restricted and repetitive behaviours (RRBs). We found that ToM ability was associated with both social communication symptoms and RRBs. EF was a correlate of ToM but had no direct association with parent-reported symptom expression. Our data suggest that in adolescence ToM ability, but not EF, is directly related to autistic symptom expression

Reading and arithmetic in adolescents with autism spectrum disorders: Peaks and dips in attainment.

In describing academic attainment in autism spectrum disorders (ASD), results are typically reported at the group mean level. This may mask subgroups of individuals for whom academic achievement is incommensurate with intellectual ability. The authors tested the IQ, literacy, and mathematical abilities of a large group (N = 100) of adolescents (14–16 years old) with ASD. Seventy-three percent of the sample had at least one area of literacy or mathematical achievement that was highly discrepant (approximately 14 standard score points) from full-scale IQ (FSIQ). The authors focused on four subgroups with either word reading (“Reading Peak” and “Reading Dip”) or arithmetic (“Arithmetic Peak” and “Arithmetic Dip”) higher or lower than FSIQ. These subgroups were largely mutually exclusive and were characterized by distinct intellectual profiles. The largest was the “Arithmetic Peak” subgroup of participants, who presented with average intellectual ability alongside superior arithmetic skills and who were predominantly in a mainstream educational setting. Overall, the most pervasive profile was discrepantly poor reading comprehension, which associated with severity of social and communication difficulties. The high rate of uneven academic attainment in ASD has implications for educational practice

UvA-DARE (Digital Academic Repository) Link to publication Citation for published version (APA): A multimodal approach to emotion recognition ability in autism spectrum disorders

A multimodal approach to emotion recognition ability in autism spectrum disorders Jones, C.R.G.; Pickles, A.; Falcaro, M.; Marsden, A.J.S.; Happé, F.; Scott, S.K.; Sauter, D.A.; Tregay, J.; Phillips, R.J.; Baird, G.; Simonoff, E.; Charman, T. General rights It is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), other than for strictly personal, individual use, unless the work is under an open content license (like Creative Commons). Disclaimer/Complaints regulations If you believe that digital publication of certain material infringes any of your rights or (privacy) interests, please let the Library know, stating your reasons. In case of a legitimate complaint, the Library will make the material inaccessible and/or remove it from the website. Please Ask the Library: https://uba.uva.nl/en/contact, or a letter to: Library of the University of Amsterdam, Secretariat, Singel 425, 1012 WP Amsterdam, The Netherlands. You will be contacted as soon as possible. Background: Autism spectrum disorders (ASD) are characterised by social and communication difficulties in day-to-day life, including problems in recognising emotions. However, experimental investigations of emotion recognition ability in ASD have been equivocal, hampered by small sample sizes, narrow IQ range and over-focus on the visual modality. Methods: We tested 99 adolescents (mean age 15;6 years, mean IQ 85) with an ASD and 57 adolescents without an ASD (mean age 15;6 years, mean IQ 88) on a facial emotion recognition task and two vocal emotion recognition tasks (one verbal; one nonverbal). Recognition of happiness, sadness, fear, anger, surprise and disgust were tested. Using structural equation modelling, we conceptualised emotion recognition ability as a multimodal construct, measured by the three tasks. We examined how the mean levels of recognition of the six emotions differed by group (ASD vs. non-ASD) and IQ ( ‡ 80 vs. &lt; 80). Results: We found no evidence of a fundamental emotion recognition deficit in the ASD group and analysis of error patterns suggested that the ASD group were vulnerable to the same pattern of confusions between emotions as the non-ASD group. However, recognition ability was significantly impaired in the ASD group for surprise. IQ had a strong and significant effect on performance for the recognition of all six emotions, with higher IQ adolescents outperforming lower IQ adolescents. Conclusions: The findings do not suggest a fundamental difficulty with the recognition of basic emotions in adolescents with ASD