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Perspectives of Adolescents With Attention-Deficit Hyperactivity Disorder Do Matter
Journal of Adolescent Health 49 (2011) 1–2
www.jahonline.org Editorial
Perspectives of Adolescents With Attention-Deficit Hyperactivity Disorder Do Matter
Attention-deficit hyperactivity disorder (ADHD) is the single most common reason for youth to be referred to mental health specialists. Although there is some debate over prevalence, there is no doubt that it is a common condition that is associated with a significant degree of morbidity and impairment in quality of life. In contrast to earlier beliefs that this condition disappears with the onset of puberty, there is now ample evidence of persistence of symptomatology into adolescence and adulthood [1]. Numerous controlled trials have demonstrated effectiveness of pharmacological treatment of ADHD in adolescents, particularly with stimulant medication, with studies going back to the 1980s [2,3]. The vast majority of randomized controlled trials are of short duration of the order of a few weeks. There have been comparatively few long-term studies. The most comprehensive was the Multimodal Treatment Study of ADHD (MTA) study, an effectiveness trial that compared active medication management, comprehensive behavior management, the combination thereof, and treatment as usual in the community [4]. At the end of 14 months, investigators found robust evidence of a positive treatment effect for both the stimulant medication and also for optimized behavioral interventions. Best results were obtained with a combination of closely monitored medication along with optimized behavior management. Naturalistic treatment does not fare as well. The powerful effects of the active treatment arms of the MTA study broke down after the study protocol was discontinued and families pursued treatment on their own. Follow-up studies performed for as long as 82 months after the period of study no longer showed persistent benefit from having belonged to active treatment arms [5]. Treatment models have been developed, such as the American Academy of Pediatrics’ clinical practice guidelines and the American Academy of Child and Adolescent Psychiatry’s practice parameters for the assessment and treatment of youth with ADHD [6,7]. There is relatively less emphasis in terms of treatment parameters for adolescents, but the principles of treatment are nonetheless relatively clear. Although there is compelling evidence of efficacy in shortterm trials, and effectiveness in the few carefully monitored
long-term effectiveness studies that have been done, fidelity to generally understood algorithms of appropriate care is poor. Remarkably few children with ADHD, particularly those treated in the public sector, receive appropriate care [8]. Those who are treated don’t receive consistent treatment over time. Adolescents are not consistently prescribed medications for ADHD, and when they are, compliance has long been noted to be uneven at best. It’s particularly common for adolescents to take exception to medication treatment, even when they have previously been identified as positive responders to intervention. Reasons for compliance issues are without doubt multiple. Qualities of impulsivity and poor attention to detail in adolescents and in their parents—who often also suffer from ADHD—likely contribute to compliance issues. It is also difficult for some adolescents to acknowledge that they have problems or that they need to take medication. Emergent substance abuse issues further compromise close follow-up with appropriate treatment. Also, evidence from neuropsychology and neuroscience suggests additional foundational explanations of problems with impaired executive functioning, along with evidence of delayed neuromaturation. A major concern is the impaired quality of life and impaired self-esteem in adolescents with ADHD who are not optimally treated and who show enduring evidence of adaptive difficulties. The studies by Bussing et al and Gajaria et al in this issue of the Journal offer provocative insights and suggest opportunities for interventions with adolescents with ADHD [9,10]. Bussing et al report on an investigation of adolescents who are at high risk for ADHD using a sophisticated logistic regression modeling statistical approach [9]. As with many other studies of youth treated in the community, most study subjects were not receiving appropriate mental health intervention, with only 42% receiving any kind of mental health care in the past year. Parental factors were associated with pursuit of mental health services, including parental ratings of inattention in their youth and parental attitudes about medication. Importantly, there were influential factors among the adolescents as well. The perception of negative stigma associated with ADHD in the adolescents themselves negatively predicted engagement in treatment. In addi-
See Related Articles pp. 7 & 15 1054-139X/$ - see front matter 䉷 2011 Published by Elsevier Inc. on behalf of Society for Adolescent Health and Medicine. doi:10.1016/j.jadohealth.2011.05.003
2
C.K. Varley / Journal of Adolescent Health 49 (2011) 1–2
tion, higher levels of functional impairment, as reported by the adolescents, as well as positive attitudes toward medications, were positively associated with the receipt of mental health care in the past year. Gajaria et al describe an investigation through ethnographic content analysis of public Facebook groups [10]. Their focus was on a unique window into the life of Facebook at a time when it was primarily a youth networking site. The investigation identified important issues regarding challenges to self-esteem and the efforts of those in the Facebook groups to promote a positive self-identity and combat negative aspects of stereotypes associated with ADHD in adolescents. There are numerous limitations to this study. It is unclear how representative this sample was in terms of the entire population of adolescents with ADHD. The authors were unable to ascertain whether Facebook participants were actually within the adolescent age range or whether they in fact had ADHD. These limitations notwithstanding, the findings that there are problems with self-esteem, negative self-view, and concerns about stigma, and that there are opportunities for remedy through the provision of mutual support, ring true. Taken collectively, these studies offer insights into the selfview of adolescents with ADHD and suggest avenues of intervention aimed at constructive psychoeducation, particularly in youth with ADHD and especially in the adolescent population. These studies’ findings specifically address issues related to stigma as a barrier to acceptance of treatment. The data indicate the importance of attending to adolescents’ perceptions regarding their mental health care, their self-view, their sense of selfeffectiveness, and the meaning of having this condition. Of all the consequences of ADHD, impaired self-esteem is perhaps the most universal and arguably the most painful. The findings of Gajaria et al and Bussing et al suggest empowering opportunities [9,10].
There remains a long road to travel before we arrive at optimal service delivery for adolescents with mental health issues, particularly those whose quality of life is affected by the presence of ADHD. Christopher K. Varley, M.D. Division of Child and Adolescent Psychiatry Department of Psychiatry and Behavioral Sciences University of Washington School of Medicine Seattle, Washington
References [1] Lara C, Fayyad J, de Graaf R, et al. Childhood predictors of adult attentiondeficit/hyperactivity disorder: Results from the World Health Organization World Mental Health Survey Initiative. Biol Psychiatry 2009;65:46 –54. [2] Varley CK. Effect of methylphenidate in adolescents with attention deficit disorder. J Am Acad Child Psychiatry 1983;22:351– 4. [3] Barkley RA. Adolescents with attention-deficit/hyperactivity disorder: An overview of empirically based treatments. J Psychiatr Pract 2004;10:39 –56. [4] MTA Cooperative Group. A 14-month randomized clinical trial of treatment strategies for attention-deficit/hyperactivity disorder. Multimodal Treatment Study of ADHD. Arch Gen Psychiatry 1999;56:1073– 86. [5] Molina BS, Hinshaw SP, Swanson JM, et al. The MTA at 8 years: Prospective follow-up of children treated for combined type ADHD in a multisite study. J Am Acad Child Adolesc Psychiatry 2009;48:484 –500. [6] American Academy of Pediatrics, Subcommittee on Attention Deficit Hyperactivity Disorder Committee on Quality Improvement. Clinical practice guideline: Treatment of the school-aged child with attention-deficit/hyperactivity disorder. Pediatrics 2001;108:1033– 44. [7] Pliszka S. Practice parameter for the assessment and treatment of children and adolescents with attention-deficit/hyperactivity disorder. J Am Acad Child Adolesc Psychiatry 2007;46:894 –921. [8] Zima BT, Bussing R, Tang L, et al. Quality of care for childhood attention deficit/hyperactivity disorder in a managed care Medicaid program. J Am Acad Child Adolesc Psychiatry 2010;49:1225–37. [9] Bussing R, Zima BT, Mason DM, et al. Receiving treatment for attentiondeficit hyperactivity disorder: Do the perspectives of adolescents matter? J Adolesc Health 2011;49:7–14. [10] Gajaria A, Yeung E, Goodale T, Charach A. Beliefs about attention-deficit/ hyperactivity disorder and response to stereotypes: Youth postings in Facebook groups. J Adolesc Health 2011;49:15–20.
www.jahonline.org Editorial
Perspectives of Adolescents With Attention-Deficit Hyperactivity Disorder Do Matter
Attention-deficit hyperactivity disorder (ADHD) is the single most common reason for youth to be referred to mental health specialists. Although there is some debate over prevalence, there is no doubt that it is a common condition that is associated with a significant degree of morbidity and impairment in quality of life. In contrast to earlier beliefs that this condition disappears with the onset of puberty, there is now ample evidence of persistence of symptomatology into adolescence and adulthood [1]. Numerous controlled trials have demonstrated effectiveness of pharmacological treatment of ADHD in adolescents, particularly with stimulant medication, with studies going back to the 1980s [2,3]. The vast majority of randomized controlled trials are of short duration of the order of a few weeks. There have been comparatively few long-term studies. The most comprehensive was the Multimodal Treatment Study of ADHD (MTA) study, an effectiveness trial that compared active medication management, comprehensive behavior management, the combination thereof, and treatment as usual in the community [4]. At the end of 14 months, investigators found robust evidence of a positive treatment effect for both the stimulant medication and also for optimized behavioral interventions. Best results were obtained with a combination of closely monitored medication along with optimized behavior management. Naturalistic treatment does not fare as well. The powerful effects of the active treatment arms of the MTA study broke down after the study protocol was discontinued and families pursued treatment on their own. Follow-up studies performed for as long as 82 months after the period of study no longer showed persistent benefit from having belonged to active treatment arms [5]. Treatment models have been developed, such as the American Academy of Pediatrics’ clinical practice guidelines and the American Academy of Child and Adolescent Psychiatry’s practice parameters for the assessment and treatment of youth with ADHD [6,7]. There is relatively less emphasis in terms of treatment parameters for adolescents, but the principles of treatment are nonetheless relatively clear. Although there is compelling evidence of efficacy in shortterm trials, and effectiveness in the few carefully monitored
long-term effectiveness studies that have been done, fidelity to generally understood algorithms of appropriate care is poor. Remarkably few children with ADHD, particularly those treated in the public sector, receive appropriate care [8]. Those who are treated don’t receive consistent treatment over time. Adolescents are not consistently prescribed medications for ADHD, and when they are, compliance has long been noted to be uneven at best. It’s particularly common for adolescents to take exception to medication treatment, even when they have previously been identified as positive responders to intervention. Reasons for compliance issues are without doubt multiple. Qualities of impulsivity and poor attention to detail in adolescents and in their parents—who often also suffer from ADHD—likely contribute to compliance issues. It is also difficult for some adolescents to acknowledge that they have problems or that they need to take medication. Emergent substance abuse issues further compromise close follow-up with appropriate treatment. Also, evidence from neuropsychology and neuroscience suggests additional foundational explanations of problems with impaired executive functioning, along with evidence of delayed neuromaturation. A major concern is the impaired quality of life and impaired self-esteem in adolescents with ADHD who are not optimally treated and who show enduring evidence of adaptive difficulties. The studies by Bussing et al and Gajaria et al in this issue of the Journal offer provocative insights and suggest opportunities for interventions with adolescents with ADHD [9,10]. Bussing et al report on an investigation of adolescents who are at high risk for ADHD using a sophisticated logistic regression modeling statistical approach [9]. As with many other studies of youth treated in the community, most study subjects were not receiving appropriate mental health intervention, with only 42% receiving any kind of mental health care in the past year. Parental factors were associated with pursuit of mental health services, including parental ratings of inattention in their youth and parental attitudes about medication. Importantly, there were influential factors among the adolescents as well. The perception of negative stigma associated with ADHD in the adolescents themselves negatively predicted engagement in treatment. In addi-
See Related Articles pp. 7 & 15 1054-139X/$ - see front matter 䉷 2011 Published by Elsevier Inc. on behalf of Society for Adolescent Health and Medicine. doi:10.1016/j.jadohealth.2011.05.003
2
C.K. Varley / Journal of Adolescent Health 49 (2011) 1–2
tion, higher levels of functional impairment, as reported by the adolescents, as well as positive attitudes toward medications, were positively associated with the receipt of mental health care in the past year. Gajaria et al describe an investigation through ethnographic content analysis of public Facebook groups [10]. Their focus was on a unique window into the life of Facebook at a time when it was primarily a youth networking site. The investigation identified important issues regarding challenges to self-esteem and the efforts of those in the Facebook groups to promote a positive self-identity and combat negative aspects of stereotypes associated with ADHD in adolescents. There are numerous limitations to this study. It is unclear how representative this sample was in terms of the entire population of adolescents with ADHD. The authors were unable to ascertain whether Facebook participants were actually within the adolescent age range or whether they in fact had ADHD. These limitations notwithstanding, the findings that there are problems with self-esteem, negative self-view, and concerns about stigma, and that there are opportunities for remedy through the provision of mutual support, ring true. Taken collectively, these studies offer insights into the selfview of adolescents with ADHD and suggest avenues of intervention aimed at constructive psychoeducation, particularly in youth with ADHD and especially in the adolescent population. These studies’ findings specifically address issues related to stigma as a barrier to acceptance of treatment. The data indicate the importance of attending to adolescents’ perceptions regarding their mental health care, their self-view, their sense of selfeffectiveness, and the meaning of having this condition. Of all the consequences of ADHD, impaired self-esteem is perhaps the most universal and arguably the most painful. The findings of Gajaria et al and Bussing et al suggest empowering opportunities [9,10].
There remains a long road to travel before we arrive at optimal service delivery for adolescents with mental health issues, particularly those whose quality of life is affected by the presence of ADHD. Christopher K. Varley, M.D. Division of Child and Adolescent Psychiatry Department of Psychiatry and Behavioral Sciences University of Washington School of Medicine Seattle, Washington
References [1] Lara C, Fayyad J, de Graaf R, et al. Childhood predictors of adult attentiondeficit/hyperactivity disorder: Results from the World Health Organization World Mental Health Survey Initiative. Biol Psychiatry 2009;65:46 –54. [2] Varley CK. Effect of methylphenidate in adolescents with attention deficit disorder. J Am Acad Child Psychiatry 1983;22:351– 4. [3] Barkley RA. Adolescents with attention-deficit/hyperactivity disorder: An overview of empirically based treatments. J Psychiatr Pract 2004;10:39 –56. [4] MTA Cooperative Group. A 14-month randomized clinical trial of treatment strategies for attention-deficit/hyperactivity disorder. Multimodal Treatment Study of ADHD. Arch Gen Psychiatry 1999;56:1073– 86. [5] Molina BS, Hinshaw SP, Swanson JM, et al. The MTA at 8 years: Prospective follow-up of children treated for combined type ADHD in a multisite study. J Am Acad Child Adolesc Psychiatry 2009;48:484 –500. [6] American Academy of Pediatrics, Subcommittee on Attention Deficit Hyperactivity Disorder Committee on Quality Improvement. Clinical practice guideline: Treatment of the school-aged child with attention-deficit/hyperactivity disorder. Pediatrics 2001;108:1033– 44. [7] Pliszka S. Practice parameter for the assessment and treatment of children and adolescents with attention-deficit/hyperactivity disorder. J Am Acad Child Adolesc Psychiatry 2007;46:894 –921. [8] Zima BT, Bussing R, Tang L, et al. Quality of care for childhood attention deficit/hyperactivity disorder in a managed care Medicaid program. J Am Acad Child Adolesc Psychiatry 2010;49:1225–37. [9] Bussing R, Zima BT, Mason DM, et al. Receiving treatment for attentiondeficit hyperactivity disorder: Do the perspectives of adolescents matter? J Adolesc Health 2011;49:7–14. [10] Gajaria A, Yeung E, Goodale T, Charach A. Beliefs about attention-deficit/ hyperactivity disorder and response to stereotypes: Youth postings in Facebook groups. J Adolesc Health 2011;49:15–20.