Survey: 40% who discontinue ADHD medication treatment concerned about loss of self
Posted Oct 23 2012 9:47am
For many individuals with ADHD the symptoms and problems associated with the disorder persist into young adulthood and beyond. In cases where an ongoing positive response to medication occurs, and where there are no significant adverse side effects, treatment that persists across many years of development could thus be helpful.
However, such ongoing treatment with medication is the exception rather than the rule. In fact, among those individuals with ADHD who start on medication, estimates from a representative community sample suggest that the average duration of treatment is less than 3 years. This may be one reason why documenting long term benefits of medication treatment has been difficult.
It is not uncommon for adolescents to protest the use of ADHD medications and to express a desire to stop taking it. An adolescent may feel he/she no longer needs to use medication and that it is no longer helpful. He or she may also have concerns about what it means to use medication to help manage their behavior and feel that it changes them in ways they do not want to be changed. Because adolescents and young adults have far greater influence over treatment decisions than children, their beliefs about medication treatment are likely to be an extremely important factor in their willingness to continue this treatment. Thus, although such beliefs may play an important role in treatment adherence, research on this issue is limited.
A study published recently online in the Journal of Attention Disorders provides a careful look at this issue among college students with ADHD [Pillow et al., (2012). Beliefs regarding stimulant medication treatment effects among college students with a history of past or current usage. Journal of Attention Disorders. DOI:10.1177/1087054712459744]. The authors were interested in examining whether beliefs about medication treatment were related to whether students who had used medication previously continued to use it in college.
Participants were 193 students (60% men) who self-reported receiving a diagnosis of ADHD and a history of using stimulant medication. These students completed a 50-item survey to learn about their beliefs about stimulant medication treatment in 4 different domains:
1. Improved attention and academics - Items on this scale assessed the extent to which students believed that medication helped with managing attention difficulties and improving their academic performance, e.g., improving grades, helping them stay on task, and helping them keep school-related priorities balanced.
2. Loss of authentic self - This scale assessed students’ belief that using stimulant medication changed them in some essential way, i.e., that it prevented them from being their true selves. The types of changes asked about included “making me less expressive in artistic pursuits”, “taking away important parts of who I am”, “decreasing my ability to laugh and joke around with others”, and “keeping me from being successful at things other than academics”.
3. Social self-enhancement - This scale measured the extent to which students believed that medication enhanced their social functioning, e.g., “helps me get along with others”, “allows my true personality to shine”, “enables me to get others to see me as I see myself”. Thus, it was a counter to the idea that medication resulted in the loss of some essential aspect of self.
4. Common side effects - Items on this scales evaluated students experience of side effects associated with stimulant medication, e.g., “decreased my ability to get a good night of sleep”, “caused me to lose my appetite”, “makes me more impulsive”.
Participants were also asked about their general attitudes towards using stimulant medication.
As noted above, the researchers were particularly interested in how medication-related beliefs differed between college students taking ADHD medication and those who had chosen to stop using it. Compared to those taking medication, those who discontinued use…
- were less likely to believe that medication improved their attention and academic performance; However, the majority still believe it was helpful.
- were more likely to believe that it resulted in a loss of their authentic self; When this occurred, it was evaluated very negatively.
- were less likely to believe that it resulted in any social self-enhancement;
- had less favorable general attitudes overall towards the use of stimulant medication.
In contrast to the differences found on these scales, current medication users and non-users did not differ in their reports of common side effects.
Summary and Implications
Results of this interesting study provides useful information concerning the decisions adolescents and young adults make about whether to continue using stimulant medication to treat their ADHD.
An especially interesting finding was that nearly 40% of students who discontinued medication reported concerns that using medication compromised their true self in some essential way. Such concerns are likely to be an important reason why many adolescents and young adults elect to stop taking their medication, even when they perceive it is helping with attention and academic performance.
Do physicians address such concerns with the individuals they treat? I am not aware of any data on this issue but would be surprised if this was regularly addressed. One implication is that clinicians should recognize that adolescents may harbor such concerns, and provide an opportunity to explore and discuss these issues. Providing a forum for adolescents to voice such concerns could be helpful in mitigating them, thus reducing the likelihood that medication would be discontinued prematurely. Parents should also be attentive to the possibility that their child has such concerns and could also be extremely helpful to their child in thinking about such issues.
The concerns that many students expressed about medication suppressing a valued aspect of their self also highlights the importance of studying this issue more carefully. It would be easy to dismiss these concerns as erroneous accounts of how medication actually affected them, but the fact that many students felt this to be the case is important. It would be helpful to learn what contributes to such beliefs and how to best address them when they arise. It would also be interesting to study whether such concerns emerge even earlier in development as there is no basis for assuming that younger children would not harbor similar feeling.
Finally, it is important that these findings not be used as evidence against the appropriate use of medication. Although some may argue that medication treatment should not be used if it leads many to believe that an essential aspect of themselves is being lost, an equivalent number of participants believed that medication enhanced their social functioning and enabled their true personality to come through. Thus, the findings highlight the importance of understanding the beliefs that each individual holds about medication treatment, as these will vary considerably and can play an important role in their willingness to continue.
– Dr. David Rabiner is a child clinical psychologist and Director of Undergraduate Studies in the Department of Psychology and Neuroscience at Duke University. His research focuses on various issues related to ADHD, the impact of attention problems on academic achievement, and attention training. He also publishes Attention Research Update , a complimentary online newsletter that helps parents, professionals, and educators keep up with the latest research on ADHD. Previous articles by Dr. Rabiner: