Seven steps to mapping health service provision: lessons learned from mapping services for adults with Attention-Deficit/Hyperactivity Disorder (ADHD) in the UK

Attention-deficit/hyperactivity disorder (ADHD) is a neurodevelopmental disorder that affects a significant proportion of individuals across their lifespan, for which there are effective, evidence based treatments [1]. Mental health service provision in higher income countries is separate for children and adults, and the transition often occurs at a key developmental stage [2, 3]. Epidemiological studies show an estimated prevalence of ADHD of 5–6% in children, and 3–4% in adults [4‐7]. The number of young people with ADHD graduating from children’s services has increased rapidly, because of a rise in childhood prescription rates, [8] and studies have found that many young people with ADHD are likely to need continued care into adulthood [9‐11]. Therefore providing a supported transition for this group in line with clinical guidelines is important [12, 13]. However, provision for adults with ADHD remains relatively scarce across the world [14] and is known to be patchy and difficult to access in the United Kingdom (UK) [15].

Atlases of Health, which map international health service provision using government and expert sources, are well-established tools designed to provide objective and reliable information on healthcare service provision [16‐18]. The European Service Mapping Schedule [19] is a survey instrument for the description and classification of mental health services. It was adapted by Signorini et al. [20], and used to survey child psychiatry representatives on the characteristics of child and adolescent mental health services (CAMHS) across the European Union (EU). While valuable, these tools often fail to triangulate government and expert reports of service provision with the experience of service users and clinicians in practice. The general focus also means that they may not capture condition specific information.

The Atlas of Variation series [21] uses routinely available data and consultation with clinical experts, to provide government reports (with maps, charts and time-series data) on provision and patient outcomes for a selection of health topics [22]. However, to date, ADHD services and outcomes have not been mapped. The information provided is also highly complex, difficult for lay readers to understand and does not include accounts from service users and clinicians. Independent regulators such as the Care Quality Commission use inspection methodology including consultations with staff and service users and observing clinical practice to provide detailed reports on the state of care [23]. Findings are reported in a format that is accessible to a range of stakeholders. However, this is a resource intensive process, and most specialisms are not identified separately from community mental health, which makes it impossible to learn about adult ADHD service provision from these reports [23]. Without a national audit aimed specifically at mapping adult ADHD provision, drawing on a range of stakeholder sources, it is difficult to quantify and address current gaps in healthcare and make the case for appropriate change.

In a recent survey of every National Health Service (NHS) mental health trust in England, senior health professionals were asked to provide information on transition protocols, pathways and commissioned services for ADHD [24]. Over two thirds of NHS Trusts responded (68%). The survey was designed to be completed by a senior healthcare professional within the trust and it is unknown whether non-response from 17 trusts reflects reluctance to report on gaps in services or other reasons for non-response such a lack of time or personnel. Less than half of the responding mental health trusts in England offered specialist provision for adults with ADHD and less than a third had specific commissioning arrangements for this group [24]. In a separate survey, all healthcare professionals working in child and adult health services in the East Midlands region of England, were asked about transitional health services for young people with ADHD [25]. The overwhelming majority of respondents reported a lack of provision [25]. Despite a relatively low response rate (19%), surveying all staff resulted in responses from a variety of professionals working with people with ADHD including psychiatrists, managers, nurses and paediatricians. This method, although more resource intensive and limited to a smaller geographic area, included perspectives of clinicians working daily with patients. It is possible however, that they will not have daily experience of service provision in practice, while the pressures of managing a resource strapped service may conflict with straightforward reporting.

Our recent systematic review of qualitative research about transition into adult ADHD services found that a lack of available information about adult ADHD services created difficulties in accessing treatment [26]. People with ADHD reported they did not know where to access treatment [27], while some clinicians reported difficulties in finding an adult service to refer patients on to [28]. This work indicates the importance of information about where services for ADHD are, what they offer and how to access them. Methods used to map ADHD services need to collect data that is relevant and accessible to patients and clinicians as well as service providers and commissioners. Different stakeholders are likely to have different perspectives on what is as well as what needs to be available and it would be interesting to explore differences between provider’s reports on service availability and patient experiences of provision.

To extend and expand the findings from previous research [20, 24, 25], we piloted and refined a multi-informant, multi-source methodology to map adult ADHD provision in the UK. This paper describes the seven step approach that we developed. The methods used are intended to meet current needs for national service data specific to ADHD and to enable a comparison of differences in reported information by different stakeholder groups.

The mapping methodology was piloted in 2016, followed by a definitive study in 2018: the mapping findings are reported in full elsewhere [29]. An iterative process of trialling and reviewing methods (Fig. 1), led the development of the seven step mapping method described in the current paper (Fig. 2).

For a detailed seven step description of piloting work and adaptations involved in the development of this method see Additional file 1. For a summary of the steps identified, see Fig. 3.

To expand and extend the findings from existing research [20, 24, 25], we piloted and refined methods for mapping adult ADHD services in the UK, with the aim of meeting current needs for national data about adult ADHD service provision. Adult ADHD continues to be under recognised in many countries, presenting particular barriers to caring for young people and adults with the condition [36], and mapping services can help to inform service development and reduce geographic health inequalities [16, 17, 21, 37]. We developed seven steps to map services rapidly, using available technology, and including the perspectives of a range of stakeholders.

Patient and public involvement (PPI) work with the parent advisory group, clinicians and commissioners, helped clarify the questions to ask. Research partnerships with clinical and ADHD support organisations made it possible to reach large numbers of informants across the UK and share findings. Piloting was instructive and important, as was a careful study of previous literature in order to produce a definitive map quickly and efficiently. Future research should aim to; gather background information on the range of services accessed by patients; develop a working definition of target services; and identify all key stakeholders, in advance of data collection.

A two-stage approach to the definition of the target service meant a wide range of services were indexed during data collection, with a narrower focus on NHS funded specialist ADHD services during analysis. The narrower focus on NHS funded specialist ADHD services, meant provision could be checked against government guidelines [12, 13, 38]. A balance needs to be struck between surveying all services relevant to stakeholders, which is time-consuming, but may reveal the sometimes hidden role of generic, voluntary and private services, and focussing on NHS specialist services. The first stage results in ‘messier’ data, but reflects stakeholders’ experiences of the complex nature of health service provision, providing validity.

Deciding on an appropriate way to narrow the focus when checking services was challenging due to high levels of heterogeneity in configuration of adult ADHD services in the UK [14], but the detailed pilot allowed us to make decisions about the narrower definitions that were based on empirical data. One recommended model of care, that of adult ADHD specialists working within general NHS mental health services [14], was not included in service checking, which is a limitation. However all generic NHS services identified by respondents as providing treatment/support were indexed. Limiting the 2018 map to specialist services for adults with ADHD funded by the NHS, produced a serviceable map in line with the study aims.

Surveying an inclusive range of informants served several functions. It helped reduce this risk of missing services [24] because multiple respondent types were asked about services in their area. It also allowed for comparisons between provider reports on service availability and patient experiences of provision. Findings are reported in full elsewhere [39]. Interestingly, over 40% of study informants identified themselves with two or more ADHD related roles, a reminder that survey respondents often occupy multiple identities [40]. Including of a range of informants is a strength when compared with mapping methods which rely on expert or government sources alone [18, 20]. However, the identification of key informants was more complex than expected; responses to the pilot, PPI work and previous literature all provided data that informed the final list.

During data collection, different dissemination methods appeared to work better for different stakeholders. Direct emails from trusted organisations gained high numbers of responses from busy clinicians. FOIs were effective when contacting commissioners, as they ensured someone with allocated time and resources received and responded to the query. FOIs can be a powerful tool for improving the transparency of mental health provision; which is known to be critical to delivering good outcomes and ensuring consistency of services [37, 41]. However care needs to be taken to ensure appropriate and responsible use, as FOIs have resource implications for the relevant public body [42]. Social media appeared to be a powerful and suitable resource for raising the profile of the survey [43]. Our use was mainly limited to Twitter, but this was an effective method of linking with ADHD focussed and appropriate clinical organisations and user groups. More proactive use of other social media formats might have increased response numbers from young adults with ADHD.

This methodology provides a blueprint for producing a definitive map quickly and efficiently. However, services are dynamic and service maps will need maintenance and clear information on the limitations of data accuracy. Although details of provision from dedicated services were checked, treatments provided by generic AMHS were not verified, meaning information was not gathered on all NHS services potentially treating adults with ADHD in line with NICE guidelines [12].

The aim of the survey was to gain a balance of responses, by geographic area and by stakeholder group, in order to achieve an accurate picture of service provision. This was achieved, although there were low response numbers from some regions and from some stakeholder groups, such as young adults with ADHD. A recent study looking at patterns of instant messaging use in students in the South West of England found 96% used Facebook and 59% used Instagram, compared with 58% using Twitter [44]. A more extensive use of social media formats that are accessible to young people with ADHD, such as Facebook (38), might have improved response numbers from these groups.

The online survey and data collection methods used were pragmatic and ‘fit for purpose’ [45], making use of technological advances to reach a wide audience rapidly and at relatively low cost. The non-probabilistic sampling methods allowed organisations to share the survey via their mailing lists without compromising data protection. It also facilitated link sharing across a variety of open forums. Respondents were not selected randomly and, except for commissioners, response rates could not be assessed, however this was not important as the aim was to gain an accurate and nuanced picture of service provision, not to generalise findings.

Future mapping work should focus on checking details of provision offered by all adult NHS services that potentially meet NICE guidelines for treatment of adult ADHD [12]. Given sufficient resources, FOI requests sent to all provider organisations of AMHS could provide this information in a time efficient and cost effective way. However, a balance needs to be struck between additional research costs involved and benefits in terms of the quality of data received. This study and previous qualitative research has found a lack of clarity within generic AMHS on whether or not they provide treatment for adult ADHD [14, 26, 36]. Therefore it would be necessary to find a method of checking that services provide treatment in practice from the perspectives of a range of stakeholders, including service users.

Finding a way of sharing and updating the map in a way that is accessible to all stakeholders is important. It is a reflection of the quality of relationships built during the mapping exercise, and high levels of unmet need [36], that a national ADHD organisation has agreed to host the map [33]. The research team is supporting them to host this resource and update it into the future. This methodology could be usefully adopted to map health services for other conditions, such as ASD, where identified barriers to transition include a lack of comprehensive and integrated adult services [46, 47].

This seven step process appears to be a pragmatic and efficient method for collating and communicating national service data about adult ADHD service provision in the UK. The inclusion of data from a range of stakeholders minimises the risk of missing information about services and allows comparison of perceptions of provision between commissioners, health workers and service users. We found information learned through PPI, and support from partner organisations both during the development of the surveys, data collection and for dissemination of results was crucial. Lessons learned here may be transferable to mapping service provision for other health conditions and in different contexts. For adult ADHD services, this method is an effective tool for quantifying provision and revealing gaps in service, so that, where indicated, an informed case can be made for change.