Several medications are available to young people with ADHD (NICE 2018); however, studies have highlighted that, as individuals with ADHD reach adolescence, medications are discontinued despite ADHD symptoms persisting (Wong et al, 2009; Newlove-Delgado et al, 2018). Few studies have explored the reasons underlying the discontinuation of ADHD medication from the perspective of young people. This study therefore aimed to better understand the reasons behind young people discontinuing medication for ADHD.
Qualitative data from semi-structured interviews conducted with young people as part of the Children and Adolescents with ADHD in Transition between Children’s and Adult Services study (Janssens et al, 2020) were used in this study. Participants were recruited from ten National Health Service trusts in England. The interviews included the following topics: participants’ current and future medication use and contact with services; their preparations for and/or experiences of the transition process; and their views on the key elements of optimal transition. The interviews were recorded and transcribed verbatim and were analysed thematically using framework analyses to determine participants’ reasons for stopping ADHD medication.
A total of 64 young people with ADHD were interviewed (n=44 male) and participants were divided into three groups according to their stage of transition between child and adult services: young people at pre-transition stage (n=21; aged 14-17 years); those who had successfully transitioned (n=22; aged 17-21 years); and those who left children’s services prior to transition but re-entered adult services later (n=21; aged 19-29 years). The overall results identified four key themes in young people’s reasons for stopping their ADHD medication: perceived balance between disadvantages and benefits of taking the medications; perception of ADHD as a childhood disorder; change in life circumstances; and challenges related to the access to the healthcare services.
- The results suggested that young people tended to stop their medication when the negative effects of the treatment, such as increased anxiety, loss of appetite and fatigue, as well as concerns about dependency and loss of normality due to the need to take regular medication, were perceived to outweigh the benefits, such as increased focus and calm, and improved ability to manage their behaviour and mood.
- Discontinuation of medication was also found to be due to the misconception that ADHD is a childhood disorder, with some young people reporting their clinicians advising that their ADHD symptoms would naturally improve entering adulthood, and others reporting a perception that the treatment was only beneficial while in school.
- Young people also reported discontinuing treatment because of personal life circumstances, such as moving home and health board, being sent to prison, family planning and pregnancy, future career intentions, and the intention of obtaining a driving licence.
- Challenges in accessing services were noted by young people in all groups, most commonly reported in relation to the transition from child to adult services, and directly led to discontinuation of medication in some young people. Missed appointments due to additional travel and prescription costs, as well as involuntary discharge from services due to a perceived lack of engagement, were other reasons given for discontinuation of treatment. The group that re-entered adult services after having dropped out of child services complained of a complete lack of referral to adult services or non-acceptance of a referral.
The authors noted that one of the major limitations of this study related to the cohort itself. Only young people who were engaged with healthcare services were interviewed, leaving unknown the reasons why those who left and remained out of services discontinued medication. Furthermore, due to the study design, data on stimulant and non-stimulant medication could not be separated. Finally, it was acknowledged that the findings may not reflect the experiences of young people with ADHD in other contexts.
Despite some limitations, the authors concluded that this study highlights the importance of improved psychoeducation for young people with ADHD and their families, to increase patients’ understanding of the importance of continuing ADHD medication into adulthood. The authors also stated that this study is the first to report that life events are a common reason for young people stopping medication for ADHD. The study also identified that certain groups may be vulnerable to treatment discontinuation at particular times. Overall, the authors recommended that a multidimensional approach is needed to address discontinuation of ADHD medication among young people.
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Disclaimer: The views expressed here are the views of the author(s) and not those of Takeda.
Janssens A, Eke H, Price A, et al. The transition from children’s services to adult services for young people with attention deficit hyperactivity disorder: the CATCh-uS mixed-methods study. Health Services and Delivery Research 2020; 8.
Newlove-Delgado T, Ford TJ, Hamilton W, et al. Prescribing of medication for attention deficit hyperactivity disorder among young people in the Clinical Practice Research Datalink 2005–2013: analysis of time to cessation. Eur Child Adolesc Psychiatry 2018; 27: 29-35.
NICE guideline 2018. Attention deficit hyperactivity disorder: diagnosis and management. Available at https://www.nice.org.uk/guidance/ng87/chapter/Recommendations. Accessed March 2022.
Titheradge D, Godfrey J, Eke H, et al. Why young people stop taking their attention deficit hyperactivity disorder medication: a thematic analysis of interviews with young people. Child Care Health Dev 2022; Epub ahead of print.
Wong ICK, Asherson P, Bilbow A, et al. Cessation of attention deficit hyperactivity disorder drugs in the young (CADDY)—a pharmacoepidemiological and qualitative study. Health Technol Assess 2009; 13: iii-iv, ix-xi, 1-120.