Stopping and restarting medication in the first year of treatment is common in children with ADHD. Use of ADHD medication declines significantly after the age of 11, despite adolescents continuing to demonstrate symptoms and functional impairment. This study attempted to delineate the reasons why children and adolescents stop ADHD medication and determine whether functional impairments are present before restarting medication.
This was a prospective, longitudinal, 12-year follow-up of the Multimodal Treatment Study of Children with ADHD (MTA) Cooperative Group study. Participants* (mean age 21.1 years at follow-up; 76% male) answered the ‘ADHD Med Reasons’ questionnaire,† in which they were asked when and why they last stopped and/or restarted ADHD medication for a month or longer, and to select their reasons for stopping from a list of 20 statements covering the following themes: medication not needed/helping or curious; side effects; logistics of taking/getting medication; social concerns/stigma; other reasons (responses were categorised on a 6-point scale: 1 = really true, 6 = not true at all).
Of the 372 participants in the study, 286 (77%) reported stopping medication for a month or longer during childhood (n=115; aged 5–12 years) or adolescence (n=171; aged 13–18 years). Participants were a mean age of 13.3 years when they last stopped taking ADHD medication. Sixty-four (17%) participants reported last restarting medication after stopping for a month or longer during childhood (n=15) or adolescence (n=49).
The most common reasons for stopping medication (>50% of patients endorsed overall) were:
- “I felt I could manage without it” (81.5%), “I wanted to find out if I could manage without it” (69.6%), “I was doing so well I no longer needed it” (68.9%), “I was tired of taking it” (67.5%), “It was not helping me” (56.3%).
The most common reasons for restarting ADHD medication (>50% of patients endorsed overall) were:
- “It helped me concentrate and/or focus in school or at work” (82.8%), “It made school and/or work easier (e.g. studied or worked longer, completed more work, and/or made it easier to understand what I read)” (79.7%), “It helped me organise my thoughts” (67.2%), “I had planned to restart after summer when school began” (57.8%), “My parents decided to restart it” (53.1%).
Over 80% of participants restarted their medication because they noticed the benefit of medication at school or work. Almost half of the participants realised that they needed the medication after stopping it, and half of the participants resumed taking their medication after stopping for the summer or restarted it as they were now allowed to take their medication selectively.
Limitations of the study included: risk of participant recall bias in retrospective self-reporting; despite demonstrating good face validity, the psychometric properties (test-retest reliability) of the ‘ADHD Med Reasons’ questionnaire were unknown; and there was a lack of information to discern whether participant medication was taken as prescribed.
The authors concluded that stopping and/or restarting medication was common in both children and adolescents with ADHD, and suggested that given the poor outcomes when medication is stopped, tailored strategies to address reasons for self-termination of medication may aid management of ADHD.
*Participant data were publicly available from the MTA cohort, where participants (N=579; aged 7.0–9.9 years) were recruited from seven sites in North America and attended follow-up assessments at 2, 3, 6, 8, 10 and 12 years after enrolment
†The ‘ADHD Med Reasons’ questionnaire was developed by the MTA Cooperative Group; items were drafted and iteratively refined based on expert review. The questionnaire asked participants to report the age they last stopped taking medication for ≥1 month and endorse how true each reason listed was for them in describing why they stopped medication at that time, using a 6-point scale with anchors of 1 = really true and 6 = not true at all
Brinkman WB, Simon JO, Epstein JN. Reasons why children and adolescents with ADHD stop and restart taking medicine. Acad Pediatr 2018; 18: 273-280.