Why are so many not taking their ADHD medication?

The ADHD Remote Technology Study of Cardiometabolic Risk Factors and Medication Adherence (ART-CARMA) is looking to provide answers to this question. Professors Jonna Kuntsi and Richard Dobson at King’s College London and Professor Josep Antoni Ramos-Quiroga at Vall d’Hebron Research Institute developed this longitudinal remote monitoring study, where 305 adults with ADHD in the UK and Spain engage with apps on their smartphones to provide clinical and physical health data for one-year, starting approximately one-month before beginning ADHD medication. 

Participants completed questionnaires every day about their medication usage (whether or not they took their medication and why), every week about potentially experienced side effects and every month about their mental and physical well-being. Participants also wore the EmbracePlus device (Empatica), which monitored their physical activity, sleep and physiological metrics, and downloaded a phone usage app onto their phones, which collected background sensor data such as frequency of app usage from phone sensors.

Data collection for the ART-CARMA study is now coming to an end, and we are starting to analyse our results. Last month, Dr Yuezhou Zhang’s paper demonstrated a range of improvements occurring during the first months of medication use, including improvements in severity of ADHD-related symptoms and impairments, reduced depression, anxiety, irritability and aggression, reduced alcohol use, healthier diet, lower blood pressure, increased physical activity, lower restlessness and improved sleep quality. This corroborates previous findings displaying the improvements that can be found during the first several months of taking ADHD medication.

So, if medication is beneficial, and is the main treatment available for adults with ADHD, why is subsequent long-term adherence and continuation so low?

Well, why not ask the adults with ADHD themselves? In our newly published paper, we conducted semi-structured interviews with ART-CARMA participants as they reached the end of their study periods (approximately one year after starting medication). 25 adults with ADHD from the UK site, between the ages of 23 and 57, provided their perspectives on their year since starting medication; how they found the process, how medication impacted their ADHD symptoms, mood, habits, behaviours and/or relationships and, ultimately, whether they were taking their medication, how and why.

After our first 25 interviews, we reached saturation, meaning we were satisfied that no new themes were emerging. Dr Hayley Denyer (a postdoctoral researcher), Dr Emilie S Nordby (a clinical psychologist and researcher) and I (a PhD student) then conducted inductive thematic analysis, a method where patterns are identified from the experiences that people share, to generate four themes that best described the general thought processes and experiences of adults with ADHD relating to ADHD medication usage.

We found that the very processing of one’s diagnosis of ADHD can impact relationship with healthcare services, general wellbeing and ultimately engagement with treatment. Managing expectations of the medication’s impact is also essential at the outset of treatment, as anticipating that medication may be a panacea – a cure for all – can lead to medication being deemed ineffective, not necessarily because it is ineffective, but because it seems so in comparison to the expected changes.

Our results also highlighted how many had difficulty accessing support, with limited clinician contact time and delays in linking parts of the health services leaving participants without access to, or support with, their medication. Ultimately, the adults in our study needed to balance costs and benefits, to determine whether the benefits of the medication justified enduring the negatives.

Generally, we contextualised the high rates of treatment non-adherence and discontinuation for adults with ADHD, highlighting how ongoing processing of the diagnosis, high expectations of the medication’s impact, available guidance from healthcare services and the ultimate balance of positives against negatives, contribute to an individual’s treatment compliance and continuation.

Our study highlighted the need for personalised treatment and the importance of the availability of non-pharmacological treatment options. This has great importance, especially in the context of the current strain that the ADHD services are under, as highlighted in the recently published NHS England ADHD Taskforce report, chaired by Professor Anita Thapar.

Gaining the perspectives from individuals with lived experience is so crucial, yet too frequently overlooked. The vital messages from this paper highlight the difficulties experienced by adults with ADHD while engaging with pharmacological treatment, and how these can impact their ability to continue with or adhere to treatment. On a more positive note, we also received, and summarise, insightful recommendations on how this can be overcome, and how adults with ADHD can be best supported during treatment to ensure the best long-term outcomes.

On a personal level, it was a true pleasure to engage in these discussions with our participants. I gained so much, not only in terms of development of this paper from my PhD and the knowledge that has informed it, but also of the importance of this research and how everyone involved truly cares about, and is excited for, its impact.

Next up, we will be using the qualitative insights provided by our participants and exploring the wealth of quantitative data that we have available in ART-CARMA. With detailed, daily data regarding mediation usage, frequent reports on clinical symptoms, physical health, environment and lifestyle, we can build a holistic and detailed picture of medication usage that can improve the service for adults with ADHD going forward and I would like to thank all 305 individuals who participated in the ART-CARMA study for making that possible.