A helping hand from wearable tech?
Rare is the adult who looks back on their adolescence and recalls years of calm sensibility and smooth control of behaviour and emotions. But for those with attention deficit hyperactivity disorder (ADHD), the difficulties navigating the teenage years can go drastically beyond the usual stroppiness.
At this particularly vulnerable time for young people with ADHD, they also need to transfer from child and adolescent mental health care to adult ADHD services. But data from the UK show we have a major problem here: most youth with ADHD do not successfully transfer to adult services, despite real needs for ongoing treatment. So, many young people with ADHD are not getting the help they need, when they may need it most.
Why wearable tech?
As a mother of teenagers, I am fully aware of the potential distraction of smartphones and other gadgets. But modern tech is here to stay – so why not make it work for us? As a scientist, I am fascinated about the opportunities wearable tech – smartwatches and phones – offer for collecting long-term, real-world data and for developing digital interventions.
Some years back, when working from a rented cottage in Cornwall during a summer “holiday” (I remember this well), I contacted a colleague at our Institute, Prof Richard Dobson. I had heard that Richard and his team had developed a mobile-health platform called RADAR-base and data collection apps for remote monitoring studies on depression and other conditions. I nearly couldn’t believe my luck: this was the solution I had been searching for, for our ADHD research! The solution to the limitations of conventional longitudinal research methods and the gateway to novel interventions.
And here we are in 2024. Having developed and piloted a remote measurement system for adolescents and adults – ADHD Remote Technology (ART) – we have now received large research grants for remote monitoring studies on ADHD. The very latest project to receive five years of funding, from the Medical Research Council, is the research programme on the transition to adulthood and adult mental health services. This is a real labour of love that brings together decades of our past research, method development, sweat and perseverance.
Why focus on transition to adulthood?
Many people with ADHD have additional conditions and difficulties, such as depression, delinquency or substance misuse, and these often first emerge in the late teenage years. Our focus should be on trying to prevent such difficulties from developing. At this age, there are also major life transitions – leaving education, starting work or moving out of the parental home – that lead to new demands and changes in available support networks.
Due to their ADHD, young people with ADHD often find these changes particularly hard. When we then add the observation that most young people with ADHD disengage from clinical services, we can see that there is a real risk for problems snowballing.
Yet: all is not bleak. We know that outcomes for people with ADHD are highly variable. We need to understand better what those individuals do differently who have more positive outcomes. Recent research also reveals that ADHD often fluctuates more over time than what we used to think in the past.
So, although ADHD is linked to a biological vulnerability, how severe the symptoms are and how impairing they are, can vary over time. Such fluctuations may be related to environmental factors. This means that to improve prevention and intervention, we need to understand what predicts improvements or worsening in the ADHD symptoms and difficulties over time.
Enter remote technology and our project, ‘ADHD Remote Technology and ADHD transition: predicting and preventing negative outcomes (ART-transition)’. In this research programme, we address three core questions: (1) What changes take place in the transition to adulthood for individuals with ADHD?; (2) What predicts these changes?; and (3) How can we prevent negative outcomes and support healthy lifestyles?
What will it be like, taking part in ART-transition?
Each of the 250 young people with ADHD will participate in the remote monitoring for two years. They first participate in two individual online assessments, with a research worker. The participants are then given a wearable device that collects data on physical activity, sleep and physiological measures, such as heart rate and breathing rate. They are also given smartphones with purpose-built Active and Passive Apps. The Passive App collects ongoing data from smartphone sensors on measures such as social interactions, digital usage, relative location and other changes in the environment.
The active monitoring involves the participant completing questionnaires and a speech task on the Active App, and completing cognitive tasks on a home computer. At the end of the two-year remote monitoring period, the participants are invited to an online interview with a research worker, so they can give feedback on their experiences of participating in the study.
We will then use the findings from the study to inform the next phase of the research, where we will work with young people with ADHD to co-design a prototype for a new ADHD-transition smartphone app. App components may include personalised feedback, personalised educational components, prompts, alerts and data sharing with clinicians. The aim is to prevent negative outcomes and support healthy lifestyles by facilitating self-management, personalisation of treatment and engagement with adult services.
We aim to give young people greater autonomy in how they manage their ADHD, in collaboration with their clinician, and place an emphasis on modifiable environmental factors.
It takes a village
We all know it takes a village to raise a child, but what does it take to put a research programme like this together? It takes a big team, with wide-ranging expertise. Our local team at the Institute of Psychiatry, Psychology and Neuroscience at King’s (Amos Folarin, Ewan Carr, Johnny Downs, Nick Cummins, Richard Dobson and myself) will work closely together with external team members from the University of Nottingham (Maddie Groom and MindTech colleagues), the ADHD support organisation ADDISS (Andrea Bilbow), software engineers from the Hyve and collaborating clinicians.
At the core of this village is, however, the young people with ADHD. They provided input at the initial focus groups during the planning stage of the research. As study participants, they will provide their time and effort for two years – a huge thank you, in advance. As app co-designers, they will share their expertise and ideas, to help other young people with ADHD in the future.
We cannot wait to get going! Take-off for ART-transition is on 22nd April 2024.
