In transition with attention deficit hyperactivity disorder (ADHD): children’s services clinicians’ perspectives on the role of information in healthcare transitions for young people with ADHD

Abstract

Background

National clinical guidelines emphasise the need for good communication of information by clinicians to young people and their parent/carers about what to expect during transition into adult services. Recent research indicates that of young people in need of transition for attention deficit hyperactivity disorder (ADHD), only a minority experience continuity of care into adulthood, with additional concerns about quality of transition. This qualitative analysis explored the role that information plays in the transition from child to adult mental health services for young people with ADHD, from the perspectives of clinicians working in children’s services.

Methods

Participants were recruited from National Health Service (NHS) Trusts located across the United Kingdom (UK), with varying service configurations. Twenty-two qualitative interviews were conducted with 15 paediatricians and seven psychiatrists working in child services and supporting young people with ADHD. The Framework Method was used to complete a thematic analysis of data related to the role of information in transitional care.

Results

Two themes were identified in relation to the role of information in supporting transition and promoting continuity of care. Information for clinicians; about adult mental health services, the young person and their ADHD, and exchanged between services. Sharing information with young people; about transition processes, self-management, to support service engagement, and tailored to be accessible to young people with ADHD. Clinicians in children’s services reported variable access to information. Clear protocols and being able to communicate about ADHD as a long-term condition, were described as having a positive impact on the transition process.

Conclusions

These findings illustrate that clear information on the transition process, and communication of evidence based and up-to-date information on ADHD as a long-term condition are essential components for clinicians supporting transition into adult services. Information exchange can be supported through transition discussions with young people, and joint meetings between services Discussions should be accompanied by accessible resources for young people and parents/carers such as leaflets and websites. Further efforts should be focussed on enabling clinicians to provide timely and appropriate information to young people with ADHD to support transition.

Background

Attention deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder, characterised by inattention, hyperactivity, and impulsivity [4, 48]. Reviews of evidence suggest a worldwide prevalence of 5.3-7.1% in children and adolescents [32, 48], and 2.6-2.8% in adults [15, 44]. As many as two thirds of young people with ADHD continue to experience symptoms into adulthood [2]. A meta-analysis of follow-up studies of children with ADHD found that 15% continue to meet full diagnostic criteria at the age of 25 years, with a further 50% experiencing some degree of continued impairments and subthreshold symptoms [14]. However, in the United Kingdom (UK), the mixed methods “Children and Adolescents with ADHD in Transition between Children’s and Adult Services” (CATCh-uS) study recently reported that very few young people with a clinically confirmed need for ongoing medication for their ADHD made a successful transition to adult services [21]. CATCh-uS was a mixed methods project involving three strands: a surveillance study examining the incidence of need for transition and successful transition; a study mapping adult ADHD services; and a qualitative study exploring the perspectives of young people, parents and clinicians [21].

Transition in health care services is defined as “a purposeful, planned process that addresses the needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centred to adult-orientated health care systems” [7]. Young people with ADHD are one of the groups least likely to make a successful transition to adult mental health services, in what has been described as a ‘failure of healthcare’, complicated by a historical lack of service provision for adults with the condition [12, 41, 42, 51]. This is despite poor outcomes across multiple domains including work and education, relationships, criminal justice, and health, with attendant economic impact among those who prematurely stop their medication [10, 24, 40]. An additional challenge in ADHD relates to stigma and misunderstanding around the condition itself, even on the part of clinicians [16].

For these reasons, transition in ADHD has recently been the focus of concerted research and policy efforts, including the publication of NICE guidance on ADHD with specific recommendations on transition [30]. Multiple barriers and facilitators to healthcare transitions have been identified for young people with long term mental health conditions [13, 27, 31, 34, 45]. A systematic review of qualitative evidence on transition in ADHD reported on hurdles to accessing care (such as meeting referral thresholds), limitations of existing adult mental health services, and inadequate availability of services [34]. Identified facilitators to transition included greater flexibility around age boundaries between services, support from specialist adult ADHD services, and improved provision of information about adult services [34]. The CATCh-uS qualitative strand involved interviews with 144 individual stakeholders from across the UK, including patients, parent/carers, clinicians from child and adult services and general practitioners. The study identified four interrelated factors which could act as barriers or facilitators to continued treatment into adulthood [21]. Firstly, whether ADHD medication was viewed as required only for education, secondly, whether medication was viewed as beneficial, thirdly the extent of parental involvement, and fourthly, feeling prepared for transition and adult life with ADHD [21].

Whilst the qualitative strand in CATCh-uS was not specifically designed to explore the role of information in the process, information-centred themes were prominent in the interviews with young people and parents. Themes identified focused on the essential role of the parent/carer as a navigator and translator of information, and defined two specific types of information: about ADHD into adulthood, and about the transition itself [35].

Access to clear information is a central component of the provision of care as well as self-management for people with long-term conditions, and is essential for both patients and clinicians. Patients need information to maximise their engagement with services and to make the best use of their involvement with services, and clinicians need the relevant patient information and resources to ensure effective clinical management [1, 47]. There are certain junctures at which information in various forms can be particularly crucial. One of these is during the transition from child to adult health services, which often coincides with transitions in education, family life and identity. National Institute for Health and Care Excellent (NICE) guidance on transition [29] recommends that information is provided in a developmentally appropriate format to young people and their parents/carers about available support and adult services; also that information about the young person is communicated between services. Relevant and clear information can facilitate engagement with care, reduce uncertainty, and assist self-management and planning, at a stage when young people may be more prone to drifting away from services [5, 41,42,43]. Whilst accounts of transition from the patients’ perspective (as discussed above) describe how the clinician is a key source of information in the transition process, little is known about how clinicians view the role of information in transition, their role as information-provider, and their own need for information.

This paper draws on an additional analysis of the CATCh-uS interviews with clinicians in children’s services (Paediatric or Child and Adolescent Mental Health Services (CAMHS)), hereafter referred to as ‘child/children’s services’, about their perspectives on the role of information in facilitating or impeding young people’s transition to adult services (Specialist or Generic Adult Mental Health Services (AMHS)). The full findings of CATCh-uS, including an overview of facilitators of smooth transition are detailed in our report to the NIHR [21]. The aim of this paper is specifically to explore the perspectives of these clinicians on the roles of information in service transition for ADHD and how it affects the success of the process, and influences outcomes for young people, and also to provide recommendations for how information available to clinicians could be improved.

Methods

This paper presents a focused study on the role of information as reported by clinicians working in children’s services, drawn from the large qualitative study of stakeholder experiences of the transition process in the CATCh-uS study.

Sampling and recruitment

Practitioners who took part in the CATCh-uS surveillance study and indicated that they were willing to take part in an interview about transition, were purposively sampled. Participants were from NHS children’s services located in different geographical areas of the UK and represented a range of local adult ADHD service models (dedicated ADHD vs. generic Adult Mental Health). For full details of recruitment strategy please see the CATCh-uS report [21].

We anticipated that 20-25 interviews would be needed from each stakeholder group to reach data saturation. A mid-recruitment break (after approximately two-thirds of interviews were completed) was included to assess saturation level, identify novel themes and re-focus the sampling strategy if required. Decisions about sample size drew on experiences of previous studies on transition and wider methodological findings regarding the anticipated stage in data collection when data saturation is likely to occur [6, 26].

Interview procedure

All participants provided written informed consent, including for audio-recording of the interviews. Semi-structured interviews took place between October 2017 and November 2018, by telephone in order to increase flexibility and accessibility. All interviews were digitally voice-recorded and transcribed verbatim. Each recruited participant was assigned a unique identifier code. Interviews were on average 40 min in duration.

The topic guides for the interviews were developed using the study’s qualitative strand research questions and covered practicalities related to transition, key elements of optimal transition, involvement of families and other services, and personal experience of failed, good and difficult transitions. Questions included “Do you feel you have been able to help the young person to make a sensible decision about what to do after this service/care stops?” and “Have you encountered cases where transition has been particularly difficult? What have been the issues? What steps were taken to resolve the difficulties?” Full topic guides are provided in the CATCh-uS report [21].

Data management and analysis

Interview recordings and transcriptions were stored on an encrypted hard drive. Once transcribed, interview data were managed using QSR International’s NVivo12 qualitative data analysis software [36] and were stored securely and password protected.

For full details and findings of the initial analysis please see the CATCh-uS report [21]. A recurrent finding identified in this analysis was the significance placed by participants on information (or the lack thereof); both by young people and parents [35], as well as clinicians. Matrix summaries relating to information during the transition process were extracted and analysed further by AP. The first stage of analysis, completed by AP, started with ‘indexing’ a small sample of interviews, to gather an insight and overview of the data. A thematic framework was then created, building on relevant sections of the framework created for the main CATCh-uS report, that identified key concepts and was used to code all remaining interview data [17]. The next stage involved writing summaries of each interview for every code. This allowed for comparison, exploration and explanation of patterns emerging [38]. This method facilitates systematic and transparent data analysis, and enables researchers to identify patterns or commonalities, as well as contradictions in and between participants’ accounts, so they can explore and test explanations for those patterns [39]. Refined themes were reviewed by SM and TND, and final themes and subthemes were then agreed [8]. See Tables 1 and 2.

Table 1 Theme 1. Information for clinicians

Table 2 Theme 2. Sharing information with young people

Ethics

Ethical approval for this element of the study was granted by NRES South Yorkshire Ethics Committee: Yorkshire & The Humber (REC Reference: 15/YH/0426) and the University of Exeter Medical School Research Ethics Committee (REC Application Number: 15/07/070).

Results

A total of 22 clinicians were interviewed from children’s services. These were 15 paediatricians and seven child and adolescent psychiatrists. They were located across 11 regions of the UK and within a variety of local adult ADHD service models. Only one region, the North West, was not represented. The sample is described in greater depth in the NIHR CATCh-uS report [21].

Two themes were identified that represent key data in relation to information provision as part of health service transitions for young people with ADHD:

• 1. Information for clinicians

• 2. Sharing information with patients

These themes are summarised below, and presented in Tables 1 and 2, with a summary of sub-themes, and illustrative quotes. For a full and detailed description of each theme, please see supplementary material. Theme one, information for clinicians is about the information that clinicians working in children’s services need in order to deliver practical elements of the transition process, and provide appropriate clinical advice, treatment, and care to young people with ADHD approaching the age of transition. Sub-themes include information about AMHS, information about the young person, and living with ADHD as a long-term condition. Also information exchange between services. Theme two, sharing information with patients is about the information clinicians reported sharing or wanting to share with young people to facilitate transition. This includes information about the transition process and what to expect. Other sub-themes included information about self-management into adulthood, relevant information to increase healthcare engagement, and tailoring information sharing methods to ensure young people with ADHD are able to access and understand key facts/concepts.

Recommendations on the types of information resources needed to support clinicians delivering transitional care were drawn from interview data. These include resources for direct use by clinicians, and for sharing with patients, and are presented in Fig. 1.

Fig. 1

Recommendations for national provision of information to facilitate healthcare transitions for young people with ADHD

Discussion

Summary of findings

Clinicians in this study felt that accurate, tailored and easily available information is a critical element in the transition process for young people with ADHD, as reflected in the two themes presented in this paper: Information for clinicians themselves, and information shared with young people. Across these themes, clinicians discussed points of best practice around the accessibility of information and information sharing as a longer-term process.

Clinicians required up-to-date information and resources to share with young people, as well as understanding and awareness of the social context for their patient. If available, this allowed them to engage in a backwards-and-forwards flow of information with the young person. This flow of information was seen as facilitating self-management during transition, for example allowing young people to try out making decisions around medication and support and reviewing what happens afterwards.. Where information was not available, easily accessible or out-of-date, however, this was viewed as having consequences both for the process of transition between services, and for the young person’s progress with understanding and managing ADHD into adulthood. We highlight some of the most important information gaps to fill in terms of policy, practice and research. These should also be viewed in the light of existing literature on other identified barriers and facilitators to transition for young people with ADHD, which are often interwoven and are likely to require integrated solutions [21, 27, 34, 45]. Identified barriers include cultural differences between child and adult services [5, 34], lack of shared transition planning between services [37], the unsupported ‘default’ role of primary care in treatment of adult ADHD [28], premature discharge from services [34], unmet need for accessible and age-appropriate services [33], the need to tackle stigma [11], variable attitudes towards medication [21, 50], and lack of training in and awareness of adult ADHD [18, 25].

Information for clinicians

Guidance often seems to take for granted that the clinician has the appropriate information to start with, and that clinicians then ‘impart’ the information to the young person or use it to negotiate and arrange care. For many clinicians in these interviews, this was clearly not the case, either for information about transition processes, or about ADHD as a long-term condition. Whilst some clinicians were aware of local transition protocols, for others, the lack of such protocols (or their lack of accessibility) made it much harder to negotiate the pathways and processes. Previous research suggested that many clinicians were not aware of their Trust’s transition protocols [19]. Similarly, participants in our interviews often lacked information about the availability and the acceptance criteria of local AMHS, which supports the findings of the CATCh-uS mapping study that many respondents were not aware of existing (dedicated) ADHD services [33]. Some clinicians perceived there to be a lack of information available to them about ADHD as a long-term condition. This may be linked to the fact that ADHD itself has been a frequently contested diagnosis, particularly in adults, while health professionals still indicate a lack of confidence in management of, and even in the validity of, the diagnosis [20, 28, 46].

Information for young people

In these interviews the clinician’s own uncertainties or gaps in up-to-date knowledge often translated into how and to what extent they shared, or were able to share, information with young people. Clinicians felt that the information they delivered and discussed with young people, as well as enabling access to AMHS, had a particularly important role in decisions around medication at the time of transition and in allowing young people to ‘test’ stopping treatment. Whilst many young people may no longer meet criteria for ADHD in adulthood, symptoms continue into adulthood for up to two thirds of children and adolescents, and a minority continue to meet full diagnostic criteria [2, 4]. As a result, as young people approach the age for transition there is likely to be a need for assessment and decision-making about any individual’s need for longer-term care and support. For a clinician working in children’s services, it will be necessary to use clinical judgement and consultation with the young person and their family to explore and test over time whether to reduce and stop treatment before adulthood, or whether ongoing treatment may be needed. These discussions and joint decisions need to be informed by a nuanced understanding of ADHD as a potential lifelong condition, and awareness of how presenting symptoms and behavioural challenges may develop and change as the young person approaches adulthood.

Therefore, conversations around treatment during transition were seen not just as a factual transfer of information but as a communication of possibility, risks and benefits, informed by dialogue with the young person, the clinician’s experience and prior knowledge, and their understanding of individual needs and family context. It was also informed by the clinician’s own views of the role of medication in ADHD. In some interviews, clinicians expressed uncertainties around the benefits of medication even where young people continued to have symptoms. However, it is also worth noting that a prominent theme in our parallel interviews with young people who had dropped out of CAMHS and re-entered services as adults, was that in retrospect they wished clinicians had emphasised the benefits of remaining on medication if warranted by symptoms and impairment rather than presenting the decision as a neutral choice [21].

Another important aspect was the sharing of information with young people about ‘what to expect’. The differences between child and adult mental health services, young people’s expectations of AMHS, and how young people actually experience AMHS has been a strong theme in prior research with clinicians and with young people [3, 5, 45]. Differences in parental involvement are often highlighted in our interviews; clinicians commented that transition to AMHS could, in fact, require greater parental involvement than care under child health services, owing to the need to organise and manage the volume and flow of information involved in transfer of care and the less ‘holistic’ approach of AMHS. When this is added to the difficulties inherent in ADHD with attention and information processing [49], it is clear that young people without an involved parent are likely to be at a significant disadvantage during the process of transition. This can further widen inequalities. Findings from our work with young people and parents underlines the importance of having a parent/carer or other supporter to seek, navigate and translate information about ADHD into adulthood, and transition between services, to facilitate engagement with services [21, 35].

Sharing information

Clinicians reported signposting young people onto other services and sources of information and advice, as well as advising young people on how they can get back in touch with services if they need to re-enter. Interestingly, this contrasts with accounts from qualitative research with young people, where many report a lack of information in terms of not knowing where to go, and not being aware of how they can re-enter services [21, 35]. These differing accounts may partially relate to the form and presentation of information shared; and what young people are able to understand and retain during healthcare appointments. Clinicians themselves voiced a need for evidence-based, good quality and consistent information that they can provide, and signpost young people to, in formats that are accessible; instead of using material not designed for ADHD or taken from other services. It is also worthwhile noting that some clinicians in this study reported advising young people that their GP would be able to provide advice and act as a portal to services. Whilst this may well be true in these individual cases, research with GPs suggests that primary care professionals often feel ill-equipped to take on such a role; and also needed better information about the condition and the support available [16, 28]. It is crucial that those whom young people approach for information are as well-informed as possible, as misinformation (however well-intentioned) can cause later distress for young people and families [35].

Strengths and limitations

This paper presents an analysis of a substantial number of interviews with clinicians from child services, across a range of different NHS Trusts and geographical areas. The sample was recruited as part of the CATCh-uS study, which had key research questions and topic guides built around the process of transition, with no specific focus on the role of information. Further themes may have been identified had we systematically enquired about the role of information. In our analysis however, it became clear that information was a significant topic with important implications for practice, meriting separate presentation. Future research could explore this issue more systematically.

Implications for practice and research

Our findings clearly suggest the need for efficient and simple ways of sharing information about transition in ADHD with clinicians. Adult ADHD remains one of the more contested conditions, affected by stigma and by under-provision of services [33], and this arguably warrants additional efforts being made to ensure that information is as easily available as possible. Information technology offers cost-effective methods of providing nationally available high-quality evidence-based information at the point of need, to support existing mechanisms of healthcare transition. Information on ADHD as a condition, tailored for each stakeholder group (clinicians in child and adult services, general practitioners, young people, and parent carers) may reduce the impact of some barriers to continuity of care. For example, nuanced information on how an adolescent with ADHD may continue to need treatment and support as an adult, may help to tackle stigma, reduce premature discharge from services, inform attitudes towards medication, and enhance awareness of adult ADHD. Routine and systematic provision of information about care pathways and locally available services to clinicians working in children’s services would make it easier to prepare young people for what to expect in adult services, and help to highlight gaps in care, stimulating work to find solutions to enable continuity of care for the young person. There are likely to be roles for a number of different agencies to improve availability and quality of such information, such as NICE, ADHD charities, and NHS informatics. With the increasing use of online or digital systems within services, there is clearly scope for linking to central or regional portals or patient information management systems through which clinicians can access up-to-date information about the condition, and about available services. These systems could also use temporal flags with prompts for topics to be discussed with patients well in advance of the age boundary, in accordance with NICE guidelines.

Given the importance of decisions made at this life stage, it is crucial that clinicians have access to up-to-date evidence on the benefits and harms of medication to enable them to have discussions with young people about their treatment. There is much more to be known about outcomes for young people with ADHD and the optimal approach to management of the condition into adulthood and beyond, such as the longer-term effects of medication [22].

There may be a place for tools for clinicians to support young people’s decision-making around transfer to AMHS and continuation of medication. Such patient decision aids have been developed for parents of children with ADHD [9], and for young people with other chronic conditions such as diabetes, e.g. Lawson et al. [23], but to our knowledge these aids have not been evaluated for young people with ADHD, representing an important avenue for co-creation and research. Although many clinicians will know their patients well, those in transition may sometimes be overlooked; therefore systems which can flag those who might be less well supported and smooth the flow of information could also be valuable. Our parallel paper [35] provides recommendations for accessible, co-created and trusted resources for young people. Research is also required to explore the most effective ways to share information that young people with ADHD can understand, retain, and use for self-management and to seek support if required. This may involve trialling information-based interventions and exploring their effectiveness in improving the outcomes of transition. NICE guidelines now emphasise the importance of the provision of information in an accessible format, as part of care for people with ADHD [30]. To facilitate such provision, NICE could produce or host information resources as part of their Tools and Resources website.

Conclusion

In conclusion, information plays an important role for clinicians caring for young people with ADHD approaching transition, enabling them to support, provide appropriate care, and inform the young person. This is perceived as having a clear link to smooth transition and improved outcomes for young people. Information flow and quality is too important to be left to chance and resource-poor local services. While clinical guidelines on transition and management of ADHD [29, 30] have been updated to highlight the importance of information provision, there remains much to be done to support clinicians in implementing these guidelines, and to avoid local variations in care where transition may depend to some extent on local expertise and knowledge. Our research adds to the case for investment in research, development, and nationally available materials for clinicians and patients.