Needs of Adolescents and Young Adults with Neurodevelopmental Disorders: Comparisons of Young People and Parent Perspectives.

This study used the Camberwell Assessment of Need for adults with Developmental and Intellectual Disabilities (CANDID) to examine the social, physical health and mental health needs of 168 young people (aged 14-24 years) with neurodevelopmental disorders and compared young person and parent ratings of need. Agreement was poor in 21 out of 25 domains. Parents consistently reported higher levels of need than young people in the majority of domains although young people with ADHD reported significantly more needs in physical health, eyesight/hearing, seizures, other mental health problems and safety of others than their parents. Both parent and young person perspectives of needs are necessary to ensure that needs that are predictive of current or future poor outcomes are not missed.

Clinical service use as people with Attention Deficit Hyperactivity Disorder transition into adolescence and adulthood: a prospective longitudinal study.

BACKGROUND: While Attention Deficit Hyperactivity Disorder (ADHD) often persists into adulthood, little is known about the needs and service use among adolescents and young adults with ADHD. The present study followed-up a cohort diagnosed with ADHD as children and assessed their: 1) needs, 2) correlates of contact with clinical services, and 3) experiences of transition from child to adult health services. METHODS: Ninety one young people aged 14-24 were recruited from the UK subset of the International Multi-Centre ADHD Genetics (IMAGE) Project. Affected young people and parents conducted face-to-face interviews and self-completion questionnaires including a modified version of the Client Services Receipt Inventory, The Barkley's ADHD rating scale, The Clinical Interview Schedule-Revised, and the Zarit Burden Interview. Changes in key need characteristics (e.g. ADHD symptoms and impairments) over a 3-year period were examined using fixed effect models. Generalised Estimating Equations (GEE) were used to explore how key characteristics (such as ADHD symptoms) were associated with contact with clinical services across the three years. RESULTS: At baseline 62 % met diagnostic criteria for ADHD and presented with a range of ADHD related impairments, psychiatric comorbidities, and significant caregiver burden. While ADHD symptoms and related impairments lessened significantly over the three years, psychiatric comorbidities and caregiver burden remained stable. The strongest correlate of contact with clinical services was age (OR 0.65 95 % CI 0.49-0.84) with the odds of reported contact with clinical services decreasing by 35 % for each year increase in age at baseline and by 25 % for each year increase in age over time. Only 9 % of the sample had experienced a transfer to adult services, with the majority reporting unmet needs in healthcare transition. CONCLUSIONS: Despite continuing needs, few were in contact with adult health services or had received sufficient help with transition between child and adult health services. The main determinant of health service use for adolescents and young adults with ADHD is age - not needs. Service models should address the needs of ADHD individuals who are no longer children.

Screening for co-occurring conditions in adults with autism spectrum disorder using the strengths and difficulties questionnaire: A pilot study.

Adolescents and adults with autism spectrum disorder (ASD) are at elevated risk of co-occurring mental health problems. These are often undiagnosed, can cause significant impairment, and place a very high burden on family and carers. Detecting co-occurring disorders is extremely important. However, there is no validated screening tool for this purpose. The aim of this pilot study is to test the utility of the strengths and difficulties questionnaire (SDQ) to screen for co-occurring emotional disorders and hyperactivity in adolescents and adults with ASD. The SDQ was completed by 126 parents and 98 individuals with ASD (in 79 cases both parent and self-report were available from the same families). Inter-rater reliability, test-retest stability, internal consistency, and construct validity were examined. SDQ subscales were also compared to clinically utilized measures of emotional disorders and hyperactivity to establish the ability to predict risk of disorder. Inter-rater reliability (r = 0.42), test-retest stability (r = 0.64), internal consistency (α = 0.52-0.81) and construct validity (r = 0.42-0.57) for the SDQ subscales were comparable to general population samples. Parent- and self-report SDQ subscales were significantly associated with measures of anxiety, depression and hyperactivity (62-74% correctly classified). Parent-report performed significantly better than self-report; adults with ASD under-reported difficulties. The SDQ shows promise as a simple and efficient way to screen for emotional disorders and hyperactivity in adolescents and adults with ASD that could help reduce the impact of these disorders on individuals and their families. However, further more systematic attempts at validation are warranted. Autism Res 2016, 9: 1353-1363. © 2016 International Society for Autism Research, Wiley Periodicals, Inc.

Pharmacological treatments prescribed to people with autism spectrum disorder (ASD) in primary health care.

RATIONALE: Autism spectrum disorders (ASDs) affect 1 % of children, having significant impact on health and social outcomes. Psychotropic medication use by individuals with ASD in the USA increased over time, and polypharmacy occurred in >50 % of those prescribed. In the UK, no psychotropic drugs are approved in ASDs, and little is known about patterns of pharmacological treatment in the ASD population and associated co-morbidities. METHODS: We used The Health Improvement Network, a nationally representative primary care database, to assess the prevalence of ASD diagnoses, psychotropic drug prescribing and neuropsychiatric co-morbidities of 0-24 year olds between 1992 and 2008. RESULTS: ASD prevalence increased 65-fold from 0.01 % (1992) to 0.50 % (2008). Psychotropic drugs were prescribed to 29 % (1,619/5,651) of the ASD cohort; the most prescribed drugs were sleep medication (9.7 % of prescribed patients), psychostimulants (7.9 %) and antipsychotics (7.3 %). More patients were given psychostimulants and sleep medications over time from 1.5-6.3 % and 2.2-5.9 % respectively. Thirty-seven per cent of the cohort had ≥ 1 record of a neuropsychiatric co-morbidity, the most common being developmental difficulties and learning disabilities (12.6 %), behavioural, conduct and personality disorders (11.1 %) and attention deficit hyperactivity disorder (7.5 %). CONCLUSIONS: British physicians are more conservative in prescribing practice than American colleagues. However, use of psychostimulants and antipsychotics is much higher in those with ASD than in the general population. Polypharmacy was seen in 34 % of prescribed patients in 2008. Additional studies examining use, efficacy, and long-term safety of antipsychotics and psychostimulants in autistic individuals are warranted.

Caregiver burden as people with autism spectrum disorder and attention-deficit/hyperactivity disorder transition into adolescence and adulthood in the United Kingdom.

OBJECTIVE: There is increasing recognition that autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD) are associated with significant costs and burdens. However, research on their impact has focused mostly on the caregivers of young children; few studies have examined caregiver burden as children transition into adolescence and young adulthood, and no one has compared the impact of ASD to other neurodevelopmental disorders (e.g., ADHD). METHOD: We conducted an observational study of 192 families caring for a young person (aged 14 to 24 years) with a childhood diagnosis of ASD or ADHD (n = 101 and n = 91, respectively) in the United Kingdom. A modified stress-appraisal model was used to investigate the correlates of caregiver burden as a function of family background (parental education), primary stressors (symptoms), primary appraisal (need), and resources (use of services). RESULTS: Both disorders were associated with a high level of caregiver burden, but it was significantly greater in ASD. In both groups, caregiver burden was mainly explained by the affected young person's unmet need. Domains of unmet need most associated with caregiver burden in both groups included depression/anxiety and inappropriate behavior. Specific to ASD were significant associations between burden and unmet needs in domains such as social relationships and major mental health problems. CONCLUSIONS: Adolescence and young adulthood are associated with high levels of caregiver burden in both disorders; in ASD, the level is comparable to that reported by persons caring for individuals with a brain injury. Interventions are required to reduce caregiver burden in this population.