What Is the Health and Well-Being Burden for Parents Living With a Child With ADHD in the United Kingdom?

Objective: To explore the burden associated with childhood ADHD in a large observational study. Methods: We recruited familes with at least one child (6-18 years) with ADHD via 15 NHS trusts in the UK, and collected data from all family members. We made careful adjustments to ensure a like-for-like comparison with two different control groups, and explored the impact of controlling for a positive parental/carer ADHD screen, employment, and relationship status. Results: We found significant negative impacts of childhood ADHD on parents'/carers' hours and quality of sleep, satisfaction with leisure time, and health-related quality of life (measured by the EuroQol-5D [EQ-5D]). We found a decrement in life satisfaction, mental well-being (as measured by the Short-Warwick Edinburgh Mental Well-Being Scale [S-WEMWBS]), and satisfaction with intimate relationships, but this was not always robust across the different control groups. We did not find any decrement in satisfaction with health, self-reported health status, or satisfaction with income. Conclusion: The study quantifies the impact on the health and well-being of parents living with a child with ADHD using a survey of families attending ADHD clinics in the United Kingdom.

Social gradients in the receipt of medication for attention-deficit hyperactivity disorder in children and young people in Sheffield.

BACKGROUND: Attention-deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder characterised by inattention and hyperactivity-impulsivity that can affect people throughout their life course. A social gradient exists in the prevalence of ADHD in the UK. Studies in other countries have shown that social gradients also exist in the receipt of medication for ADHD. Socioeconomic position is potentially an unrecognised and modifiable factor in children and young people's receipt of medication for ADHD in the UK. AIM: The aim of the study was to investigate if socioeconomic position could explain in part whether or not children and young people in Sheffield are receiving medication for ADHD. METHOD: We used multivariate logistic regression modelling to investigate whether socioeconomic position could explain variation in receipt of medication for ADHD in children and young people in a cross-sectional study. We collected data from 1354 children and young people with a diagnosis of ADHD across three Sheffield centres between January and December 2016. Independent variables were age, gender, religion, ethnicity, comorbidities, and Index of Multiple Deprivation decile (derived from home postcode). RESULTS: Our results showed a social gradient in the receipt of medication for ADHD (P<0.01); an increase in one decile of the Index of Multiple Deprivation was associated with 10% lower odds of receipt of medication for ADHD (adjusted odds ratio 0.90, 95% CI 0.84-0.97). CONCLUSION: Children and young people from more deprived backgrounds are more likely to receive medication for ADHD. This is the first time that a social gradient in children and young people's receipt of medication for ADHD has been shown in a UK sample.

Using Recurrent Neural Networks to Compare Movement Patterns in ADHD and Normally Developing Children Based on Acceleration Signals from the Wrist and Ankle.

Attention deficit and hyperactivity disorder (ADHD) is a neurodevelopmental condition that affects, among other things, the movement patterns of children suffering it. Inattention, hyperactivity and impulsive behaviors, major symptoms characterizing ADHD, result not only in differences in the activity levels but also in the activity patterns themselves. This paper proposes and trains a Recurrent Neural Network (RNN) to characterize the moment patterns for normally developing children and uses the trained RNN in order to assess differences in the movement patterns from children with ADHD. Each child is monitored for 24 consecutive hours, in a normal school day, wearing 4 tri-axial accelerometers (one at each wrist and ankle). The results for both medicated and non-medicated children with ADHD, and for different activity levels are presented. While the movement patterns for non-medicated ADHD diagnosed participants showed higher differences as compared to those of normally developing participants, those differences were only statistically significant for medium intensity movements. On the other hand, the medicated ADHD participants showed statistically different behavior for low intensity movements.

Guideline Development for Technological Interventions for Children and Young People to Self-Manage Attention Deficit Hyperactivity Disorder: Realist Evaluation.

BACKGROUND: Attention deficit hyperactivity disorder (ADHD) is a complex neurodevelopmental disorder characterized by inattention, hyperactivity, and impulsivity. ADHD can affect the individual, the individual's family, and the community. ADHD is managed using pharmacological and nonpharmacological treatments, which principally involves others helping children and young people (CAYP) manage their ADHD rather than learning self-management strategies themselves. Over recent years, technological developments have meant that technology has been harnessed to create interventions to facilitate the self-management of ADHD in CAYP. Despite a clear potential to improve the effectiveness and personalization of interventions, there are currently no guidelines based on existing evidence or theories to underpin the development of technologies that aim to help CAYP self-manage their ADHD. OBJECTIVE: The aim of this study was to create evidence-based guidelines with key stakeholders who will provide recommendations for the future development of technological interventions, which aim to specifically facilitate the self-management of ADHD. METHODS: A realist evaluation (RE) approach was adopted over 5 phases. Phase 1 involved identifying propositions (or hypotheses) outlining what could work for such an intervention. Phase 2 involved the identification of existing middle-range theories of behavior change to underpin the propositions. Phase 3 involved the identification and development of context mechanism outcome configurations (CMOCs), which essentially state which elements of the intervention could be affected by which contexts and what the outcome of these could be. Phase 4 involved the validation and refinement of the propositions from phase 1 via interviews with key stakeholders (CAYP with ADHD, their parents and specialist clinicians). Phase 5 involved using information gathered during phases 1 to 4 to develop the guidelines. RESULTS: A total of 6 specialist clinicians, 8 parents, and 7 CAYP were recruited to this study. Overall, 7 key themes were identified: (1) positive rewarding feedback, (2) downloadable gaming resources, (3) personalizable and adaptable components, (4) psychoeducation component, (5) integration of self-management strategies, (6) goal setting, and (7) context (environmental and personal). The identified mechanisms interacted with the variable contexts in which a complex technological intervention of this nature could be delivered. CONCLUSIONS: Complex intervention development for complex populations such as CAYP with ADHD should adopt methods such as RE, to account for the context it is delivered in, and co-design, which involves developing the intervention in partnership with key stakeholders to increase the likelihood that the intervention will succeed. The development of the guidelines outlined in this paper could be used for the future development of technologies that aim to facilitate self-management in CAYP with ADHD.

Automatic Extraction and Detection of Characteristic Movement Patterns in Children with ADHD Based on a Convolutional Neural Network (CNN) and Acceleration Images.

Attention deficit and hyperactivity disorder (ADHD) is a neurodevelopmental disorder, which is characterized by inattention, hyperactivity and impulsive behaviors. In particular, children have difficulty keeping still exhibiting increased fine and gross motor activity. This paper focuses on analyzing the data obtained from two tri-axial accelerometers (one on the wrist of the dominant arm and the other on the ankle of the dominant leg) worn during school hours by a group of 22 children (11 children with ADHD and 11 paired controls). Five of the 11 ADHD diagnosed children were not on medication during the study. The children were not explicitly instructed to perform any particular activity but followed a normal session at school alternating classes of little or moderate physical activity with intermediate breaks of more prominent physical activity. The tri-axial acceleration signals were converted into 2D acceleration images and a Convolutional Neural Network (CNN) was trained to recognize the differences between non-medicated ADHD children and their paired controls. The results show that there were statistically significant differences in the way the two groups moved for the wrist accelerometer (t-test p-value <0.05). For the ankle accelerometer statistical significance was only achieved between data from the non-medicated children in the experimental group and the control group. Using a Convolutional Neural Network (CNN) to automatically extract embedded acceleration patterns and provide an objective measure to help in the diagnosis of ADHD, an accuracy of 0.875 for the wrist sensor and an accuracy of 0.9375 for the ankle sensor was achieved.

The impact of ADHD on the health and well-being of ADHD children and their siblings.

Childhood attention-deficit/hyperactivity disorder (ADHD) has been associated with reduced health and well-being of patients and their families. The authors undertook a large UK survey-based observational study of the burden associated with childhood ADHD. The impact of ADHD on both the patient (N = 476) and their siblings (N = 337) on health-related quality of life (HRQoL) and happiness was quantified using multiple standard measures [e.g. child health utility-9D (CHU-9D), EuroQol-5D-Youth]. In the analysis, careful statistical adjustments were made to ensure a like-for-like comparison of ADHD families with two different control groups. We controlled for carers' ADHD symptoms, their employment and relationship status and siblings' ADHD symptoms. ADHD was associated with a significant deficit in the patient's HRQoL (with a CHU-9D score of around 6 % lower). Children with ADHD also have less sleep and were less happy with their family and their lives overall. No consistent decrement to the HRQoL of the siblings was identified across the models, except that related to their own conduct problems. The siblings do, however, report lower happiness with life overall and with their family, even when controlling for the siblings own ADHD symptoms. We also find evidence of elevated bullying between siblings in families with a child with ADHD. Overall, the current results suggest that the reduction in quality of life caused by ADHD is experienced both by the child with ADHD and their siblings.

Unmet needs associated with attention-deficit/hyperactivity disorder in eight European countries as reported by caregivers and adolescents: results from qualitative research.

INTRODUCTION: Attention-deficit/hyperactivity disorder (ADHD) is a neurobehavioral disorder characterized by inattention, impulsivity, and hyperactivity, the levels of which are inappropriately high for an individual's developmental age. OBJECTIVE: The objective of this study was to explore the unmet needs of children/adolescents with ADHD and their caregivers in eight European countries. METHODS: Semi-structured interviews with 38 caregivers of children/adolescents (aged 6-17 years) with ADHD and no or less serious comorbidities and 28 adolescents (aged 13-17 years) with ADHD and no or less serious comorbidities were conducted, audio-recorded, transcribed into English, and coded for analysis. RESULTS: Caregivers reported their own ADHD-related issues, including making personal accommodations, such as limiting activities and spending extra time/effort caring for their child/adolescent, social impacts, and strained relationships. Medication was generally considered helpful; however, most children experience core ADHD symptoms while on medication (reported by 88 % of caregivers and 100 % of adolescents). Adolescents often reported schoolwork difficulties (96 %) and peer issues (75 %), while caregivers reported school issues (84 %) and peer difficulties (79 %). Caregivers reported minimal ADHD education and community support. Caregivers (29 %) and adolescents (54 %) desired medication that better controlled symptoms but had concerns about being oversubdued. Caregivers reported concerns about adverse effects (21 %). CONCLUSIONS: European caregivers of children/adolescents with ADHD identified multiple unmet needs, which persist despite treatment. Adolescents noted impacts on school and social interactions consistent with caregivers. Future research is needed to quantify the study findings, and, ultimately, ease the impact of ADHD on patients and their caregivers.

The long-term outcomes of interventions for the management of attention-deficit hyperactivity disorder in children and adolescents: a systematic review of randomized controlled trials.

PURPOSE: To systematically identify and review the currently available evidence on the long-term outcomes of recommended attention-deficit hyperactivity disorder (ADHD) interventions following randomized controlled trials with children and young people. METHOD: A systematic search was conducted to identify trials >1 year in length using the following databases: CINAHL (January 1982- July 2012), MEDLINE (Ovid and Cambridge Scientific Abstracts [CSA]), Psych info, Science Direct (Elsevier), and Cochrane Library. Hand searches of key journals in the subject, book chapters, and conference proceedings were also carried out. Relevant papers were critically appraised using the Cochrane risk of bias tool. RESULTS: Eight controlled trials were identified as being relevant, of duration ranging from 1 year to 8 years (at follow up). The total number of participants in the studies was 1,057, of whom 579 (54.7%) were from one cohort and included 26 different outcome measures. Results suggest there is moderate-to-high-level evidence that combined pharmacological and behavioral interventions, and pharmacological interventions alone can be effective in managing the core ADHD symptoms and academic performance at 14 months. However, the effect size may decrease beyond this period. CONCLUSION: This review has highlighted the paucity and limitations of the evidence investigating the long-term outcomes of recommended interventions for managing ADHD symptoms. There is little evidence to suggest that the effects observed over the relatively short term are maintained throughout longer periods of impairment. Furthermore, much of the existing evidence examining effectiveness beyond 12 months does not include newer medications currently available or consider significant contextual and cultural differences, such as UK/European and Asian populations. Longitudinal studies are required to examine the long-term outcomes for children and young people with ADHD managed with currently recommended service interventions. They should also include the whole spectrum of ADHD, with its full range of coexisting conditions, and cultural and contextual diversity.

Differences between children and adolescents in treatment response to atomoxetine and the correlation between health-related quality of life and Attention Deficit/Hyperactivity Disorder core symptoms: Meta-analysis of five atomoxetine trials.

OBJECTIVES: To explore the influence of age on treatment responses to atomoxetine and to assess the relationship between core symptoms of attention deficit/hyperactivity disorder (ADHD) and health-related quality of life (HR-QoL) outcomes. DATA SOURCES: Data from five similar clinical trials of atomoxetine in the treatment of children and adolescents with ADHD were included in this meta-analysis. STUDY SELECTION: Atomoxetine studies that used the ADHD Rating Scale (ADHD-RS) and the Child Health and Illness Profile Child Edition (CHIP-CE) as outcome measures were selected. INTERVENTIONS: Treatment with atomoxetine. MAIN OUTCOME MEASURES: Treatment group differences (atomoxetine vs placebo) in terms of total score, domains, and subdomains of the CHIP-CE were compared across age groups, and correlations between ADHD-RS scores and CHIP-CE scores were calculated by age. RESULTS: Data of 794 subjects (611 children, 183 adolescents) were pooled. At baseline, adolescents showed significantly (p < 0.05) greater impairment compared with children in the Family Involvement, Satisfaction with Self, and Academic Performance subdomains of the CHIP-CE. Treatment effect of atomoxetine was significant in both age groups for the Risk Avoidance domain and its subdomains. There was a significant age-treatment interaction with greater efficacy seen in adolescents in both the Risk Avoidance domain and the Threats to Achievement subdomain. Correlations between ADHD-RS and CHIP-CE scores were generally low at baseline and moderate in change from baseline and were overall similar in adolescents and children. CONCLUSIONS: Atomoxetine was effective in improving some aspects of HR-QoL in both age groups. Correlations between core symptoms of ADHD and HR-QoL were low to moderate.

Young adults with ADHD: an analysis of their service needs on transfer to adult services.

OBJECTIVES: To identify the ongoing service needs of young people with attention-deficit hyperactivity disorder (ADHD). DESIGN: A case note review of all children aged 14 and over with a diagnosis of ADHD seen in a paediatric neurodisability clinic. PARTICIPANTS: 139 young people aged 14 years and over on 1 September 2007 with a diagnosis of ADHD were identified from ADHD service user databases at a centre in Sheffield, UK. RESULTS: 102 young people were on medication for ADHD and just over 50% had well controlled ADHD. 71% had at least one co-morbid condition. 46 patients had had intervention from child and adolescent mental health services and 17% had offended. 37% were likely to need transition to adult mental health services as soon as they left paediatric services and 36% would benefit from the expertise of a clinical nurse specialist, either to support a general practitioner (GP) or adult mental health professionals. CONCLUSIONS: The recent National Institute for Health and Clinical Excellence guidelines highlight the need to provide transition services for young people with ADHD who have continuing impairment. The need for services for adults with ADHD is also recognised. The study confirms and refines the nature of this need in the local population. Young people with mental health problems in addition to their ADHD will need support from adult mental health services. However, a significant group of young adults are likely to be managed well by specialist nurses working with GPs in a primary care setting or adult mental health.

A multi-centre, randomised, open-label study of atomoxetine compared with standard current therapy in UK children and adolescents with attention-deficit/hyperactivity disorder (ADHD).

OBJECTIVE: To assess the broader efficacy (i.e., improvements in quality of life/functional outcomes) of atomoxetine compared with standard current therapy (SCT) in UK paediatric patients with ADHD and to explore clinician/parent/child perceptions of ADHD. RESEARCH DESIGN AND METHODS: A total of 201 patients with ADHD were randomised into this multi-centre, open-label study to receive atomoxetine (n = 104) or SCT (n = 97) for 10 weeks. Broader efficacy was assessed using the parent-rated Child Health and Illness Profile-Child Edition (CHIP-CE) total (global) t-score. Secondary outcome measures included the five CHIP-CE domains; parent-rated Family Burden of Illness Module (FBIM); investigator-rated ADHD-Rating Scale; investigator-rated Clinical Global Impression (CGI)-Severity/Improvement scales; and child-rated Harter Self-Perception Profile (HSPP). RESULTS: Quality of life of children/adolescents with ADHD was extremely compromised at baseline (CHIP-CE total t-scores: atomoxetine, 23.2 +/- 12.2; SCT, 23.9 +/- 11.0), and improved during the 10-week study for both groups; the CHIP-CE score was statistically significantly higher for patients treated with atomoxetine (38.4 +/- 1.3) compared with SCT (30.8 +/- 1.3) at week 10 (p < 0.001). ADHD-RS, CGI-Severity, and CGI-Improvement scores were significantly different between the groups in favour of atomoxetine (p < 0.001). There was a statistically significant difference between the groups in the HSPP Social Acceptance domain in favour of atomoxetine, but not in the five other HSPP domains or FBIM total score. Atomoxetine was well-tolerated. CONCLUSIONS: Results from this open-label trial show that atomoxetine is superior to SCT in addressing broader efficacy and functional outcomes in UK children/adolescents with ADHD. This study contributes to the understanding of broader efficacy in children with ADHD, and is timely in light of recent NICE guidance.