Background
Attention Deficit Hyperactivity Disorder (ADHD) is a neurodevelopmental condition characterised by inattention, hyperactivity and impulsivity, which present in at least two settings, interfering with functioning [
1]. The mean worldwide prevalence of ADHD is between 5.29 and 7.1 % in children and adolescents (<18 years) [
2,
3] and 4.4 % in adults [
4]. It is now accepted that ADHD can persist into adulthood for the majority of individuals [
5‐
7] and as a result, adults experience pervasive impairment across multiple domains including academic [
8,
9], occupational [
10], relational and self-concept [
11] and is associated with psychiatric comorbidity [
12], self-perceived stress [
13] and poor health outcomes [
14,
15]. Furthermore, adults with ADHD have increased mortality rates [
16], linked to psychosocial adversity and unnatural causes, including accidents [
17].
Research on adult ADHD has focused on symptomatic improvement with medication [
18,
19] and non-pharmacological treatments [
20]. However, the availability of these treatments is limited in many countries [
21], due to limitations in mental health services, including awareness of the persistence of ADHD into adulthood and provision of sufficient services for these individuals. The scientific literature on health services for adult ADHD is similarly restricted, being derived mostly from children and adolescent populations, with only a small handful of studies conducted in the UK, describing small data sets [
22‐
25]. However, the adverse consequences of ineffective service provision, particularly in the period of transition from paediatric to adult services, have been well and long articulated [
24‐
27].
In addition to a dearth of research on service provision for adult ADHD, there are well-documented barriers to the application of any research evidence to the frontline of health care. The ‘evidence transfer gap’ has been linked to the size and complexity of the research, difficulties in developing evidence based clinical policy, ineffectual continuing education programmes and poor access to best evidence and guidelines [
28]. For ADHD, there are additional disorder-specific barriers, including cognitive impairment [
29], and stigmatisation by the public, peers and authorities [
30‐
37]; furthermore, there is a distinct lack of clear therapeutic pathways for adult ADHD which health providers can adopt. A coherent framework for service provision for adults with ADHD is required in order to advance and improve existing services, and serve as a guide to new services. The current paper addresses this gap in service delivery research by describing the development of a recovery-based tool, the ADHD Star, and outlining how it can be used in services for adults with ADHD, for pathway planning, and the delivery and evaluation of the efficacy of treatments. In this paper, recovery is seen as a personal journey rather than a set outcome.
Results and discussion
The aim of the current advancement was to develop a tool to serve as a framework to guide service provision for adults with ADHD. We
first aimed to understand the aspirations and goals of service users and determine a meaningful and structured ‘journey of change’ across disorder-specific domains of need. Such an approach should define the desired outcomes of a person's life, based on the goals that they set for themselves. These goals should be individualised and consider: a decent place to live, employment and/or opportunity to contribute, education, friends and recreation outlets. Together, these outcomes will comprise the quality of one's life [
44].
Second, we aimed to develop a tool that incorporated this knowledge in a way that was accessible to professionals and service users. Outcome Stars developed by Triangle Consulting Social Enterprise have already been successfully utilised in health services in the UK [
45‐
47], therefore, a similar approach was adopted for developing a tool for adults with ADHD. In line with other Outcome Stars, dimensions relating to personal recovery were produced, with service user progress assessed along these dimensions. The ADHD Star consists of eight dimensions that relate to personal recovery (see Table
1). In collaboration with a health-care professional, service users rate each dimension on the ‘Ladder of Change’ (see Table
2) from ‘Being Stuck’ to ‘Self-Reliance’. Specific descriptors for each step of the Ladder of Change relating to adult ADHD were developed [see Table
3 for an example].
Table 1
The eight areas of the ADHD Star
1. Understanding your ADHD. This is about understanding how your ADHD affects you, and feeling you have some control over it. It covers getting diagnosed, making informed choices about treatment options, and being able to explain your behaviour to others and ask for what you need. |
2. Focus and attention. This is about learning ways to help you pay attention to people and concentrating on tasks in a flexible way, so you can get things done. |
3. Organising yourself. This is about the skills that you need to manage your life independently – managing time, sorting out your money, dealing with bills and paperwork, managing domestic tasks, not losing your possessions and coping with travel. |
4. Friends and social life. This is about skills you need to have positive relationships with other people – family, friends, partners, colleagues, online friends and the wider community. It is about the quality of your relationships. |
5. Thinking and reacting. This is about coping with strong feelings like anger and frustration. It is about managing negative impulses, like gambling, binge drinking, reckless driving or self-harm, thinking before you act, and not harming yourself or others, disrupting other people or damaging property. |
6. Physical health. This is about how well you look after yourself – eating well, exercising, getting enough sleep, not misusing drugs, not smoking or drinking too much. It includes avoiding things that make managing your ADHD harder. |
7. How you feel. This is about feeling positive, at ease and mostly ok about life. It is about accepting yourself, and being able to bounce back from life’s ups and downs, and cope with difficult emotions. |
8. Meaningful use of time. This is about work, training or education – knowing what you want to do, building your skills and finding a meaningful occupation. |
Table 2
Five steps on the ‘ladder of change’
1. Stuck. Service user may not be engaged or interested in change. |
2. Getting help. Service user is starting to open up to help, but not yet taking imitative. |
3. Trying things out. Service user is trying new things, but may give up easily if they do not seem to work. |
4. Finding what works. Service users have made some achievements, and overcome barriers. |
5. Choice and self-reliance. Service user is doing well and is on track with their recovery. |
Table 3
Ladder of change descriptors from domain ‘Understanding your ADHD’
1. My life is chaotic and I don’t know why. No one is helping me. |
2. My life is chaotic, but I have some help and have been given information about ADHD. |
3. I’m trying to understand my ADHD and starting to try different options but this often doesn’t work. |
4. I am learning what helps me cope with my ADHD, with some help. |
5. I understand how my ADHD affects me and I mostly feel in control. |
The ADHD Star addresses a gap in the current provision of services for adults with ADHD, offering a person-centred measure of progress in meaningful dimensions of change. Currently, instruments utilised with adults with ADHD in the UK healthcare system [
48] focus on symptom measurement, highlighting deficit and impairment compared to the normal population. Many national guidelines recommend the assessment of deficit, and as such the focus of professionals and subsequent interventions is to remedy the deficits of the individual and on occasions their environment [
49]. However, we know from previous work [
42] that adults with ADHD have a different view on the types of interventions they would require, which are not limited to medicines. Rather, service users with adult ADHD desire a wider range of interventions, which the medical model alone cannot address. Therefore, a clinical approach based on achievement or ‘growth’ rather than ‘symptom reduction’ should be adopted for adults with ADHD. This view is consistent with the movement in the treatment of other psychiatric disorders [
50,
51], and those that generate more person-centred care outcomes [
52].
The ADHD Star offers a basis of care delivery for adults with ADHD, which has many advantages over current practice. First, it emphasises collaboration between service users and health-care professionals. Engagement with service users can be improved through the conversation generated by the tool. The outcome of this conversation is a shared care plan guided by adult ADHD specific domains that will resonate with the individual’s needs. A predicted consequence of this person-centred care is an improvement in adherence with proposed interventions and reduction in outpatient non-attendance rates. Second, the ADHD Star ensures that several domains of potential improvement will be considered as part of the assessment, thus opening the opportunity of multidisciplinary plans to be formulated and broader, holistic interventions applied. Third, the ‘ladder of change’ not only provides the opportunity to assess the service user’s current functioning, but also identifies the next step along that journey, thus ensuring robust goal-setting. Fourth, the ADHD Star enables different healthcare professionals to offer specialist input according to their skill and training across a specific domain, strengthening professional identity and specialisation. Fifth, when reviewed accordingly, the ADHD Star can be used as a tool to enable outcome-based commissioning.
There are some potential limitations to the implementation of the ADHD Star in healthcare services. Administration can take approximately two hours, which some services would deem too time-consuming. However, this time is spent in collaborative care-planning with the service-user, and will ensure meaningful goals are set and enhance commitment to agreed interventions. Therefore, we argue that ultimately, the time spent administering the ADHD Star will be saved elsewhere in failed interventions, and disengagement of service users. The ADHD Star was specifically designed to focus on meaningful outcomes for service users, and thus purposely omits ‘hard’ outcomes, i.e., symptom reduction. In isolation, the ADHD Star would neglect these outcome areas, which may be important to assess for monitoring the success of appropriate medical interventions as recommended by many authorities [
53]. Thus, we recommend that the ADHD Star is used as part of a clear diagnostic and treatment pathway, such as the one outlined by the National Institute for Health and Clinical Excellence [
54], to develop a care plan with clarity around multidisciplinary interventions and generate goals that are specific, measurable and realistic. If however some service users have co-occurrence with other disorders either mental illness [
4] or neurodevelopmental disorders [
55] that are the primary cause of impairment, a clinical decision needs to be made as to whether another tool should be used to chart the service user’s recovery journey.
Conclusions
People with ADHD present in adulthood with impairments that have been developing for years, which are attributed to their symptom experience. As a result of this longevity, a framework is required to underpin a programme of evidence-based multidisciplinary interventions that have a clear direction and goals. We suggest that the ADHD Star offers such a framework and serves as a means to monitor outcomes for the purposes of service development. Future research should focus in investigating if the ADHD Star correlates with change on existing measures of ADHD-related impairments in quality of live or objective changes in an individual’s life such as changes in income, job status, housing, education and romantic relationship status.
Acknowledgements
The authors would like to acknowledge the contribution of Sue Keoghan, who facilitated the data collection stages of the project. The authors would like to acknowledge the contribution of the healthcare professionals and service users involved in the data generation and pilot stages of the ADHD Star, as well as those involved in the facilitation of the workshops from Triangle Consulting Social Enterprise.