Mapping health services for ADHD is resource intensive, and current methods do not separate specialist services from generic mental health services. In addition, government data with accounts from service users and clinicians are often not triangulated. This makes it difficult to quantify current gaps in provision of adult ADHD services and makes a case for change. This study developed a 7-step approach to mapping adult ADHD service provision in the UK.
A mapping method was piloted in 2016 and was run definitively in 2018 (the mapping findings have been reported elsewhere [National Institute for Health Research, 2019]). After trialling and reviewing methods, 7 steps to mapping a service were developed: 1) defining target service*; 2) identifying informants; 3) designing a survey†; 4) data collection; 5) data analysis and handling; 6) communicating findings; and 7) hosting/updating. Individuals with ADHD, their families, health workers and commissioners were involved in the design, data collection and dissemination of the research findings. The iterative development of the methods was guided by an advisory group of parents of young people with mental health difficulties, including ADHD. Survey distribution and communication of findings was supported by clinical and ADHD-focused organisations. Details of identified services (location, service name, provider information) provided by the informant were verified against online information.
Defining target service
Services were divided into two groups: 1) a comprehensive and inclusive index of the wide range of public, private and voluntary services where adults with ADHD could access treatment or support in the UK, as reported by informants; and 2) National Health Service (NHS)-funded specialist ADHD services with details of available treatments.
Gathering differences in service knowledge was achieved by targeting a range of key stakeholders. For the 2018 survey, informants could identify themselves as any of the following: young person with ADHD (aged ≤17 years); adult with ADHD (aged ≥18 years); parent/carer/partner of someone with ADHD; in an ADHD support role; paediatrician; psychiatrist; general practitioner; clinical psychologist; education practitioner; nurse; manager; allied health professional; researcher/academic; administrator; clinical commissioner; or other.
Designing the survey
A short online questionnaire in lay terms accessible to all informants was used. The 2018 survey took respondents a median time of 3 minutes to complete and achieved 2371 responses (79% completed all questions).
Distribution links via emails sent to the mailing lists of national organisations were the most effective dissemination tool. Overall, 530 psychiatrists, 74 paediatricians, 387 general practitioners, 306 health professionals and 455 service users took part in the 2018 survey. The use of social media, including Twitter, appeared to raise awareness of the survey.
Data analysis and handling
Comparison of data provided by different informant groups was more straightforward with the use of a single survey in 2018, and reduced the risk of data-processing errors. A pre-populated list of services had been identified in the pilot study, making service identification faster in the 2018 study.
Presenting the final list of services using the interactive tool, Google My Maps, enabled the service locations to be communicated via a research webpage. This resulted in 34,000 views, suggesting that it was accessible to a large number of stakeholders.
Hosting/updating service map
A national ADHD professional body, which supports practitioners and provides information to all stakeholders, will host and update the map.
This study had some limitations. For example, although all services were checked, treatments provided by generic adult mental health services were not verified; therefore, information on all NHS services potentially treating adults with ADHD in line with National Institute of Health and Care Excellence (NICE) guidelines may not have been gathered. Additionally, there were low responses from some regions and from some stakeholders, particularly young people with ADHD.
The authors indicated that this 7-step process was a pragmatic and efficient method for collating and communicating national service data about adult ADHD service provision in the UK. This method was considered an effective tool for quantifying the provision of adult ADHD services and identifying gaps.
Read more about mapping adult ADHD services in the UK here
*These were broadly defined as “any mental health service for people with ADHD aged ≥18 years” located in the UK. In the 2018 study, this could also include any “specialist doctor or team, mental health team, clinic, charity or support group that treats or supports adults with ADHD”
†Surveys were either tailored by respondent type and included 9–15 questions (pilot study) or were suitable for all respondent types and made up of 5–9 questions (2018 survey). The survey collected basic demographic data and informants were asked to provide details of services they were aware of for adults with ADHD
National Institute for Health Research. Young people with attention deficit hyperactivity disorder (ADHD) in transition from children’s services to adult services (Catch-uS): a mixed methods project using national surveillance, qualitative and mapping studies. 2019. Available at: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/142152/. Accessed September 2019.
Price A, Janssens A, Dunn-Morua S, et al. Seven steps to mapping health service provision: lessons learned from mapping services for adults with attention-deficit/hyperactivity disorder (ADHD) in the UK. BMC Health Serv Res 2019; 19: 468.