Situación general de la Fuerza de Tareas Regimiento de Infantería
El 23 de Marzo de 1992, por nota, el Ejército me comunica fecha y número del decreto de
Our aim was to investigate service use and needs among people with ADHD and ASD at the transition from adolescence to young adulthood (from ages 14 to 24 years). We wished to further understand (1) the demographic and medical correlates (e.g. age and comorbid conditions) of service use, (2) if current services are meeting the needs of young people with ADHD and ASD and (3) to what extent, and at what cost, family members of affected young people are able to meet these needs.
Background
Neurodevelopmental disorders such as ASD and ADHD are of increasing concern given their high cost to health services, individuals and families. For example, recent estimates suggest that the cost to the UK economy of supporting children with an ASD is approximately £2.7B (US$4.4B) each year and the cost of
supporting adults is much higher (US$40.4B each year).7Moreover, although ASD and ADHD are often
thought of as childhood disorders, both can persist into adolescence and young adulthood. Approximately 96% of those diagnosed with an ASD as children still warrant diagnosis in young adulthood.8The figure is
lower for ADHD, with persistence rates estimated between 15% and 65%, depending on the diagnostic criteria used.9
Not only do young people (adolescents and young adults) with these disorders continue to experience symptoms, they also retain significant impairments. For example, most young people with an ASD show continued impairments in daily living skills, communication, social interaction, employment and education.10–13 Young adults with ADHD tend to achieve greater independence than their peers with ASDs, but are still more likely than the general population to be unemployed,14experience more frequent job losses,14,15underachieve
in education,16experience instability in emotional relationships16,17and display antisocial behaviours.18–20
Even though symptoms and impairments continue among young people with ASD and ADHD, few services exist to support those with these disorders through adulthood.21–23Additionally, as these conditions have been found to be underdiagnosed among young adults,24,25many are likely to remain solely reliant on family and
friends for assistance. Thus, the situation for most young people with an ASD or ADHD is that they continue to experience symptoms and impairment, but have limited support from services and so rely on families. Although many studies have investigated service use and needs of children with developmental disorders (e.g. ASD), to date little is known about the service use and needs of these groups as they reach
adolescence and transition to adulthood. Nonetheless, concern has been expressed in the UK parliament about the perceived failure to provide effective transitioning because of:
l inconsistency of referral and treatment criteria
l poor communication between services
l lack of continuity
l conflict between the‘child/family’ approaches of paediatric mental health services and the individual approach of adult mental health services
In summary, there is the perception that there are significant problems in the provision of services for ‘youngsters’ as they transition into young adulthood. However, the evidence to help inform the debate is lacking. Hence, research into the needs of young adults with ASD or ADHD and their carers is important in order to design and implement appropriate and effective care programmes and support for carers as well as young adults with this disorder. This first section of our work therefore investigated the following in both ASD and ADHD: (1) service use, met and unmet needs, (2) the role of family members in meeting needs, (3) changes over time in service use and needs and (4) the consequences of these changes for the young
person’s and the nominated family member’s well-being. Our approach was to use a core set of measures
for both disorders when possible, but to use more appropriate disorder-specific measures when prudent.
Methods used that were common to both ADHD and ASD
We conducted an observational study based on face-to-face interviews and self-completion questionnaires with young people with ADHD and an ASD and their parents (usually mothers) at yearly intervals. The ADHD study was a 3-year prospective study; the ASD group was followed for 2 years [this difference in follow-up time arose owing to delay from Research Ethics Committees (RECs), resource constraints and time limits for the programme set by the National Institute for Health Research (NIHR); for further details, please see Obstacles and solutions]. The study collected information on health service use, needs and social/ demographic and health information relating to participants and their family member at the time of the interview. For the ADHD study, self-completion questionnaires were also administered to adolescents/young adults to obtain information regarding drug and alcohol use and problems with the police. Differences in the study design between the ADHD and ASD groups are highlighted in the sections that follow.
Study site
Data collection largely took place in participants’ homes or at the Institute of Psychiatry (IoP). Most participants were from Greater London; the remainder were spread throughout England, extending from Cornwall to Lincolnshire in the north-east.
Sample
Our study included 183 families consisting of young people aged 14–24 years (n = 82 with ADHD and
n= 101 with ASD) and their parents. More detailed information on sample sizes is provided in Tables 1
and 4. Families were recruited through their children’s childhood clinical diagnoses of ADHD or an ASD from Child and Adolescent Mental Health Services (CAMHS) and adult clinics, charities and research databases that form part of our clinical research networks. Clinical diagnosis of autism was confirmed in
all cases using the Autism Diagnostic Interview– Revised27(ADI-R) and ADHD (combined type) was defined
using the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV), criteria. As participants in the ADHD group were originally recruited for the International Multi-Centre ADHD Genetics (IMAGE) programme, they were excluded if they had been diagnosed with autism, epilepsy, general learning difficulties, brain disorders and any genetic or medical disorder associated with externalising behaviours that might mimic ADHD based on both history and clinical assessment.
Recruitment for the ADHD sample began on 1 April 2009 and ended on 23 February 2011, for the ASD sample it began on 7 June 2010 and ended on 20 October 2011. Both studies received REC approval from
the London– Camberwell St. Giles REC (previously known as the Joint South London and Maudsley and
the IoP REC, South East London REC 4). The ASD REC reference is 04/H0807/71 and the ADHD REC reference is 08/H0807/68.
Instruments common to both ADHD and ASD studies
The instruments common to both studies are described below. Those used only in either the ADHD or the ASD elements of the project are described in the relevant disorder-specific section (see Chapters 2 and 3). The level of need of the young person was captured using the Camberwell Assessment of Need for Adults
with Developmental and Intellectual Disabilities (CANDID).28CANDID assesses needs across 25 domains,
including social, physical, mental health, self-care and practical needs. For each domain, the young person
TABLE 1 Descriptive characteristics of ADHD study sample and variables (n= 82)
Variable % Mean (SD) Range Missing (n)
YP age (years) 17.50 (2.30) 14–21 0
YP male 89 0
YP white or white British 100 0
YP education Full time 57 0 Part time 7 0 Not in education 34 0 PR education Low 63 2 High 37 2 YP accommodation Family home 87 0 Other 13 0
YP residing in Greater London 56 0
YP DIVA above cut-off point (> 6) 73 2
YP CIS-R 7.90 (6.50) 0–29 1
YP CIS-R above cut-off point (> 12) 27 1
YP impairments 4.46 (2.72) 0–10 3
YP total needs (parent report) 5.05 (3.43) 0–25 0
Met (parent report) 2.58 (2.30) 0–25 0
Unmet (parent report) 2.48 (2.51) 0–25
YP AUDIT-C 4.99 (3.89) 0–12 6
YP AUDIT-C above cut-off point (> 4) 65 0–12 6
YP drug use in past month 24 7
YP drug use ever 48 7
YP problems with police in past 12 months 25 7
YP exclusion from school 50 0
YP not in contact with services 41 0
YP in contact with services
Children’s service 33 0
Adult service 10 0
ADHD service all ages 16 0
Childhood
CD 37 2
AUDIT-C, Alcohol Use Disorders Identification Test Consumption; CD, conduct disorder; CIS-R, Clinical Interview Schedule– Revised; DIVA, Diagnostic Interview for ADHD in Adults; PR, parent report; SD, standard deviation; YP, young person.
and the parent were asked whether or not there was a significant need (coded as 1). If so, further questions were asked to ascertain if sufficient formal and/or informal support was being received. If adequate support was received, the need was classified as‘met’ (regardless of whether or not it was met by formal or informal carers); if insufficient support was received the need was classified as‘unmet’. Both met and unmet need scores were calculated by summing the number of domains where each was recorded. A total needs score
(range 0–25) was calculated by summing the met and unmet need scores.28
We adapted a brief series of questions on drug use from the Office for National Statistics (ONS) survey
Mental Health of Children and Young People in Great Britain, 2004 Report.29Young people were asked
to self-rate the frequency and nature of drug use from a range of drugs including cannabis, cocaine and heroin. For each individual drug, a question was asked regarding whether or not the participant had ever used this drug, even if just once. If the young person answered yes to this first opening question, two more questions were asked: (1) at what age the young person had first used this drug and (2) whether or not the young person had used this drug in the past month.
Alcohol use was assessed using the Alcohol Use Disorders Identification Test Consumption (AUDIT-C), a brief and validated three-question screen that can help identify hazardous and harmful drinking.30The
AUDIT-C is an abbreviated version of the 10-question Alcohol Use Disorders Identification Test (AUDIT); the only screening instrument of hazardous alcohol use specifically designed for international use that is consistent with International Classification of Diseases, Tenth Edition (ICD-10), definitions of alcohol dependence and harmful alcohol use. Higher scores indicate greater likelihood of hazardous and harmful drinking and may reflect greater severity of alcohol problems and dependence, as well as a greater need for more intensive treatment.
Problems with police were examined through a series of questions based on those in the background information questionnaire used in the adult ADHD service at the Maudsley Hospital (adapted for this study). All participants were asked whether or not they had been in trouble with the police in the past 12 months. Those who answered yes were asked a brief series of questions regarding the nature and frequency of these problems (e.g. frequency of custodial sentences, times spent in a prison cell, appearances in court).
Caregiver burden was measured using the 12-item Zarit Burden Interview.31This captures the psychological
and social impact of caring and asks respondents to rate the extent to which they agree or disagree with statements regarding their feelings about the results of caring on a five-point scale, with possible responses ranging from 0 (‘never’) to 4 (‘nearly always’). A total score (0–48) was calculated by summing the scores for each question.31
We used a modified version of the Client Service Receipt Inventory (CSRI) to capture service use.32In
particular, participants were asked to state whether or not they were under the formal care of child or adult health services, with those answering yes recorded as currently being in touch with services (coded as 1). The CSRI was completed jointly by the parent and young person (where they took part).
Obstacles and solutions
Our main obstacles related to five main factors:
1. delays with REC approval and the need to submit separate ethics applications for both groups 2. reaching young people
3. attrition, a problem common to all longitudinal studies but of particular concern for the ADHD group 4. the online completion of the Development and Well-Being Assessment (DAWBA) by parents of the
ASD group
5. the lack of detail on prescribing patterns in an epidemiological sample that could be accessed in the time scale of this programme.
First, approval of the ASD research project for the purposes of the Mental Capacity Act 200533led to
significant delays due to the higher prevalence of LDs. As there is currently no standardised or accepted protocol for assessing whether or not a person lacks capacity to consent to take part in research it was necessary to develop a protocol for assessing capacity for this research project. Thus, a mental capacity assessment was adapted from one used in an earlier project under the same NIHR programme grant (REC 09/H0807/72). As this took some time to develop and to be approved by the local REC, the ASD study began 1 year after the ADHD study. This meant that ASD participants were followed for only 2 years (instead of 3 years, as for ADHD participants).
Second, our original design for the ADHD sample was based on contacting parents (as participants were contacted as children we only had contact details for parents). However, we soon amended the research design to be more inclusive in approach to young people, rather than approaching only via parents. To this effect, initial letters of invitation were sent both to parents and the adolescents/young adults at their parents’ homes.
Third, in order to reduce attrition (and non-response), especially among those with ADHD, we implemented a variety of measures. As participants were initially recruited through the IMAGE sample, the newsletter was revived and sent on an occasional basis to participants with summaries of the research and key findings (this has been led by Professor Asherson and his colleagues).
Fourth, we encountered difficulties in getting parents to complete the online DAWBA for their children with an ASD. This is because this online assessment is relatively time-consuming. We adopted several solutions to address this issue. Our researchers repeatedly contacted those with incomplete DAWBAs, reminding them of the need to provide this information. Furthermore, our researchers offered to assist parents in completing the forms. Finally, we offered parents a gift voucher of £20 in order to compensate them better for time taken to complete the DAWBAs.
Furthermore, we were concerned by the lack of accurate prescribing data and an epidemiological sample that we could access– as this raises issues about the generalisability of our results. Hence, we developed a collaboration with Professor Ian Wong (who was then at the School of Pharmacy) to examine medication use in a nationally representative data set based on general practitioner (GP) records: The Health
Improvement Network (THIN). The data for young people with ADHD have already been published and so we examined psychotropic drug prescribing and neuropsychiatric comorbidities among 0- to 24-year-olds with ASD between 1992 and 2008 in a nationally representative primary care database. Further details outlining the rationale for this component and our results are provided later in this report (see Chapter 20).