Exploring quality of life in families of children living with and without a severe food allergy

This study aimed to explore the impact of food allergy on quality of life in children with food allergy and their primary caregivers, compared to a healthy non-food allergy comparison group. Food allergy children (n = 34) and control children (n = 15), aged 8–12, and their respective primary caregivers (n = 30/n = 13), completed generic quality of life scales (PedsQL™ and WHOQOLBREF) and were asked to take photographs and keep a diary about factors that they believed enhanced and/or limited their quality of life, over a one-week period. Questionnaire analysis showed that parents of children with food allergy had significantly lower quality of life in the social relationships domain and lower overall quality of life than the comparison parents. In contrast, children with food allergy had similar or higher quality of life scores compared to comparison children. Content analysis of photograph and diary data identified ten themes that influenced both child and parental quality of life. It was concluded that although food allergy influenced quality of life for some children, their parent's quality of life was hindered to a greater extent. The variability in findings highlights the importance of assessing quality of life in individual families, considering both children with allergies and their primary caregivers

A qualitative process evaluation of a randomised controlled trial of a parenting intervention in community (school) settings for children at risk of attention deficit hyperactivity disorder (ADHD)

Background: Interventions for parents of children experiencing emotional and/or behavioural difficulties can help to improve their children’s health, educational and social outcomes. However, the desirability and acceptability of screening and offering such interventions for attention-deficit hyperactivity disorder (ADHD)-type problems are currently unclear. This article is a qualitative process evaluation of a pragmatic cluster randomised controlled trial (Trial registration: ISRCTN87634685; reported elsewhere) to assess the feasibility and acceptability of a school-based parenting intervention programme for parents and teachers of children with high levels of ADHD symptoms. Methods: Parents (n = 22) and teaching staff (n = 29) took part in semi-structured group or individual interviews, either by telephone or face-to-face, following the main trial. Interviews were digitally-recorded, transcribed verbatim and subjected to thematic analysis. Results: The parenting intervention was acceptable to parents and teachers, and they were enthusiastic about the need for parenting groups in the school environment and stressed the importance of parent-school collaboration. Parents generally stated a preference for universal recruitment approaches to such programmes whilst teachers described the need to target specific parents. Most parents who took part in the parenting intervention described it favourably and many saw benefits, at least in the short-term. Parents differed in their preferred group size, with some desiring one-to-one sessions and others favouring a larger group. Non-attending parents reported barriers to attendance such as fear of attending in a group, previous use of the programme, work and other commitments. Suggestions to improve the programme included: clearer communication; offering booster sessions; and greater collaboration with teachers. Conclusions: It is feasible to deliver parenting intervention programmes within or near schools. The intervention was acceptable to the majority of parents, thus retention was high, but recruitment was difficult and reaching the parents with the most need was challenging. The findings of the process evaluation identified greater benefits to families than were apparent in the main trial. Recommendations identified by parents and teaching staff may be used to inform service delivery and future research to enhance recruitment to parenting interventions in the school environmen

A systematic review evaluating the implementation of technologies to assess, monitor and treat neurodevelopmental disorders: A map of the current evidence

Technology-based interventions provide an attractive option for improving service provision for neurodevelopmental disorders (NDD), for example, widening access to interventions, objective assessment, and monitoring; however, it is unclear whether there is sufficient evidence to support their use in clinical settings. This review provides an evidence map describing how technology is implemented in the assessment/diagnosis and monitoring/ treatment of NDD (Prospero CRD42018091156). Using predefined search terms in six databases, 7982 articles were identified, 808 full-texts were screened, resulting in 47 included papers. These studies were appraised and synthesised according to the following outcomes of interest: effectiveness (clinical effectiveness/ service delivery efficiencies), economic impact, and user impact (acceptability/ feasibility). The findings describe how technology is currently being utilised clinically, highlights gaps in knowledge, and discusses future research needs. Technology has been used to facilitate assessment and treatment across multiple NDD, especially Autism Spectrum (ASD) and attention-deficit/hyperactivity (ADHD) disorders. Technologies include mobile apps/tablets, robots, gaming, computerised tests, videos, and virtual reality. The outcomes presented largely focus on the clinical effectiveness of the technology, with approximately half the papers demonstrating some degree of effectiveness, however, the methodological quality of many studies is limited. Further research should focus on randomised controlled trial designs with longer follow-up periods, incorporating an economic evaluation, as well as qualitative studies including process evaluations and user impact

The validity of the Strengths and Difficulties Questionnaire (SDQ) for children with ADHD symptoms

Background: The Strengths and Difficulties Questionnaire (SDQ) is widely used to assess child and adolescent mental health problems. However, the factor structure of the SDQ is subject to debate and there is limited evidence investigating measurement equivalence invariance (ME/I) between treatment groups, informants, and across time.Method: A randomised controlled trial (RCT) recruited 250 participants (6-17 years) who had been referred for an attention deficit hyperactivity disorder (ADHD) assessment. Participants and their clinician either received or did not receive a QbTest report (computer task measuring attention, impulsivity and activity). Parents and teachers completed the SDQ at baseline and 6-months later. This study aimed to understand the factor structure of the SDQ in a clinic referred ADHD sample, and validate the scale as a screening/diagnostic aide and as a measure of treatment outcome both in clinical and research settings. Exploratory Structural Equation Modelling (ESEM) was performed to examine the factor structure, and ME/I was assessed between treatment groups, informants, and time points. The criterion validity of the SDQ predictive algorithm for ADHD was compared with clinician and research diagnoses using logistic regression and tests of diagnostic accuracy. Results: A 5-factor structure provided the best fit with strong factorial invariance between treatment groups and across time points, but not across informants (parent and teacher ratings). SDQ ratings of ‘probable’ hyperactivity disorder were good predictors of clinical (OR=10.20, 95%CI 2.18-48.71,p=0.003) and research diagnoses of ADHD (OR=6.82, 95%CI 1.95-23.84,p=0.003), and research diagnoses of Hyperkinetic disorder (OR=4.02, 95%CI 1.13-14.25,p=0.031). Further examination of the SDQ hyperactivity ‘probable’ rating showed good specificity (84.5%-74.5%) but poor sensitivity (45.0-42.5%) for ADHD.Conclusion: The findings indicate the SDQ is a valid outcome measure for use in RCTs and clinical settings. However, care should be taken when using the SDQ predictive algorithm to screen for ADHD in clinically referred samples

Understanding the Impact of Home Confinement on Children and Young People with ADHD and ASD During the COVID-19 Pandemic

To understand whether the mental health of children and young people (CYP) with and without attention-deficit/hyperactivity disorder (ADHD) and/or autism spectrum disorder (ASD) were differentially affected by COVID-19. We analysed data (n = 6507) from the Co-Space study, a UK web-based longitudinal survey. CYP with ADHD (n = 160;2.5%), ASD (n = 465;7%), and ADHD + ASD (n = 155;2.4%) were compared with a reference group (n = 5727;88%) using parent-completed questionnaires [Strengths and Difficulties Questionnaire (SDQ) & Pandemic Anxiety Scale (PAS)]. Baseline to 1-month follow-up differences were compared using linear regression models. CYP with ADHD and/or ASD had higher scores at baseline than other CYP. At follow-up, CYP with ASD showed small but significant improvements in symptoms (SDQ), compared with the reference group. CYP with ASD experienced a worsening of disease anxiety (PAS) and CYP with ADHD a deterioration in functional impairment. These findings indicate a mixed pattern of pandemic-related impact for CYP with ADHD and/or ASD

Developing mHealth remote monitoring technology for attention deficit hyperactivity disorder: a qualitative study eliciting user priorities and needs

Background: Guidelines in the United Kingdom recommend that medication titration for attention deficit hyperactivity disorder (ADHD) should be completed within 4-6 weeks and include regular reviews. However, most clinicians think that weekly clinic contact is infeasible, and audits have shown that this timeline is rarely achieved. Thus, a more effective monitoring and review system is needed; remote monitoring technology (RMT) may be one way to improve current practice. However, little is known about whether patients with ADHD, their families, and clinicians would be interested in using RMT. Objective: To explore patients’, parents’, and health care professionals’ views and attitudes toward using digital technology for remote monitoring during titration for ADHD. Methods: This was a qualitative study, and data were collected through 11 focus groups with adults and young people with ADHD, parents of children with ADHD, and health care professionals (N=59). Results: All participant groups were positive about using RMT in the treatment of ADHD, but they were also aware of barriers to its use, especially around access to technology and integrating RMT into clinical care. They identified that RMT had the most potential for use in the ongoing management and support of ADHD, rather than during the distinct titration period. Participants identified features of RMT that could improve the quality of consultations and support greater self-management. Conclusions: RMT has the potential to augment support and care for ADHD, but it needs to go beyond the titration period and offer more to patients and families than monitoring through outcome measures. Developing and evaluating an mHealth app that incorporates the key features identified by end users is required

The Validity of the SNAP-IV in Children Displaying ADHD Symptoms

The Swanson, Nolan, and Pelham Rating Scale (SNAP-IV) is a widely used scale that measures the core symptoms of attention deficit hyperactivity disorder (ADHD). However, there are contradictory findings regarding factor structure. Factor structure and measurement equivalence/invariance (ME/I) analysis on parent and teacher SNAP-IV for children referred for an ADHD assessment (n = 250; 6-17 years), revealed a 2-factor structure provided the best fit. SNAP-IV scores were also compared with clinician diagnosis of ADHD and research diagnoses of ADHD and hyperkinetic disorder (HKD). Parent ratings of inattention and hyperactivity/impulsivity were good predictors of research but not clinician diagnosis. For teacher ratings, only hyperactivity/impulsivity scores were associated with research and clinician diagnosis. SNAP-IV scores showed high sensitivity but low specificity to clinician diagnosis. The SNAP-IV is a valid outcome measure for use in RCTs and clinical settings, and is best used as a screening rather than a diagnostic tool for ADHD

The implementation of telehealth to assess, monitor and treat neurodevelopmental disorders: a systematic review

Background: In response to COVID-19 there is increasing momentum behind the development and delivery of telehealth. To assess the anticipated exponential growth in telehealth it is important we accurately capture how telehealth was used in specific fields of mental health prior to COVID-19. Objective: The aim of this review was to highlight how telehealth had been used with clinical samples in the neurodevelopmental (NDD) field, including for patients with NDD, their families, and healthcare professionals. To identify which technologies show greatest potential for implementation into health services the review evaluates the technologies for effectiveness, economic impact, and readiness for clinical adoption. Methods: A systematic search of the literature was undertaken (April 2018 - updated until December 2019) using: Medline, Web of Science, Scopus, CINAHL Plus, Embase, and PsycInfo. Data extracted included the type of technology, how the technology was used (assessment, treatment, monitoring), participant characteristics, reported outcomes and the authors’ views on clinical effectiveness, user impact (including feasibility and acceptability), economic impact, and readiness for clinic adoption. A quality review of the research is reported using the Oxford Centre for Evidence-Based Medicine (OCEBM) Levels of Evidence. Results: A total of 42 studies met the inclusion criteria. These included participants and/or their families with autism spectrum disorders (ASD; n=21), attention deficit hyperactivity disorders (ADHD; n=8), ADHD and/or ASD (n=3), communication - disorders (n=7), and tic disorders (n=2). The majority of studies were with children/young people and/or their caregivers. The focus of most studies was treatment (n=33), rather than assessment (n=4) or monitoring (n=5). Telehealth services demonstrated promise for being clinically effective, predominantly in relation to diagnosing and monitoring NDDs. In the treatment of NDD, telehealth services were usually equivalent to control groups. There was some evidence for positive user and economic impact, including service delivery efficiencies, such as increasing treatment availability and decreasing waiting times. However, these factors were not widely recorded across all the studies. Telehealth was demonstrated to be cost-effective in the few studies that considered this. The quality of the studies varied, with many having small sample sizes and inadequate control groups. Only 11/42 were randomized controlled trials, the main other methodologies included case studies or case series (n=12), qualitative studies (n=6), and non-comparative trials (n=5). Conclusions: The use of telehealth has the potential to increase the availability of treatment, decrease waiting times for diagnosis, and aid in the monitoring of NDD. Further research, with more robust and adequately powered study designs as well as consideration of cost-effectiveness and efficiency savings, is needed. The review highlights the extent of the use of telehealth technologies prior to COVID-19 and the movement to invest in remote access to treatments