2021 MBHR Measure: Outcome monitoring of ADHD functional impairment in children and youth

QCDR Name: MBHR Mental and Behavioral Health Registry

Clinical Recommendation Statement

Numerous organizations have issued guidelines for the assessment and treatment of attention deficit/hyperactivity disorder (American Academy of Pediatrics1; American Academy of Child and Adolescent Psychiatry2; National Institute for Health and Care Excellence3; Canadian ADHD Resource Alliance4). A majority of individuals diagnosed with ADHD suffer at least one other comorbid behavioral or psychiatric disorder and experience significant impairments affecting one or more functional domains including academic performance, family relations, peer relations, and adaptive skills. Evidence supports use of a variety of psychosocial and psychopharmacological treatments, and a number of professional organization guidelines recommend use of these therapies. The American Academy of Pediatrics Clinical Practice Guideline1 strongly recommends the use of an evidence-based parent and/or teacher administered therapy as the first line of treatment for preschoolers (ages 4-5 years), any U.S. Food and Drug Administration-approved medication and/or evidenced-based behavioral therapy for elementary school children (ages 6-11 years), and any FDA-approved medication for adolescents (ages 12-18 years). The AAP also recommends, albeit less strongly, concomitant use of FDA-approved medications for preschoolers and concomitant evidence-based behavioral therapy for adolescents. Common approaches and criteria for evaluating effective behavioral therapies as well as lists of FDA-approved medications (at the time of publication) are provided within this Guideline1 and its supplemental materials.

Measure Rationale

Attention deficit/hyperactivity disorder (ADHD) is among the most common neurodevelopmental disorders in children and adolescents with typical prevalence estimates ranging between 5 and 10%.5-9 The disorder is also associated with significant functional impairments as evidenced by the high comorbidity with disruptive behavioral disorders (oppositional defiant and conduct disorder)10,11 and findings of increased rates of learning difficulties, risk-taking behaviors, criminality, substance use, injury, suicide, and other psychiatric illnesses.12-18 Researchers estimate that U.S. educational and judicial system responses to functional problems cost society an additional $15.5 to $25.5 billion annually (in 2010 dollars).19 Longitudinal cohort data can now begin framing the public health implications for these problems in terms of early mortality risks with new findings citing an absolute 4.4% increase in mid-life fatalities20 and an 8.4 year reduction in estimated life expectancy21 among adults characterized with select ADHD profiles in childhood. Annual excess healthcare costs for children and adults with ADHD exceed $35 and $100 billion, respectively,19 and when differentiated, a significant portion of these expenses are dedicated to non-treatment related care (e.g., inpatient, emergency department, etc.).22 Several evidence-based behavioral and pharmacological treatment options are available,1,23,24 but low accession and lack of sustained utilization currently limit the public health impact of interventions.20,21 Higher quality care, marked by routine outcome monitoring and adaptive treatment response,1,25 is a best practice model proposed by many to combat these costly trends.21,22,26,27

Presence of functional impairment is most often the cause for seeking initial medical attention; yet, historically, care providers tend to focus on symptom reduction as the primary emphasis of treatment.28 The distinction between symptoms and function can be murky.29 Symptoms tend to be more general, less context dependent and are traditionally viewed as proxies for more specific functional outcomes that reflect “real-world consequences of the disorder.”28 While symptom reduction is a worthy goal of treatment, when unaccompanied by significant functional improvement, lower symptom scores are unlikely to be perceived as successful treatment outcomes in the eyes of a patient or patient’s family. The need to align improvements in functional problems and symptoms has begun to receive recognition among diagnostic classification systems30-32 and treatment guideline developers.1,33 The measure proposed herein takes this a step further, with an exclusive focus on function for ADHD treatment monitoring. In line with goals of the Mental and Behavioral Health Registry of the American Psychological Association, this function measure intends to capture a treatment outcome that is most meaningful to both practitioners and patients. A single instrument for measuring ADHD function is selected for this purpose, the Weiss Functional Impairment Rating Scale (WFIRS). The WFIRS is chosen because it includes wide coverage of functioning, is freely reproducible, and demonstrates psychometric support for validity and reliability.34,35 A minimal important difference (MID) is also established for the parent report version (WFIRS-P) and can be used as a change sensitivity indicator for treatment monitoring.36 Interestingly, this MID is virtually identical to the calculated reliable change index from the same study.

1. Wolraich M, Brown L, Brown RT, et al. ADHD: clinical practice guideline for the diagnosis, evaluation, and treatment of attention-deficit/hyperactivity disorder in children and adolescents. Pediatrics. 2011;128(5):1007-1022.
2. Pliszka S. Practice parameter for the assessment and treatment of children and adolescents with attention-deficit/hyperactivity disorder. Journal of the American Academy of Child and Adolescent Psychiatry. 2007;46(7):894-921.
3. National Guideline C. National Institute for Health and Care Excellence: Clinical Guidelines. Attention deficit hyperactivity disorder: diagnosis and management. London: National Institute for Health and Care Excellence (UK) Copyright (c) NICE 2018.; 2018.
4. Canadian Attention Deficit Hyperactivity Disorder Resource Alliance. Canadian ADHD Practice Guidelines. 3rd ed. Toronto, ON CADDRA; 2011.
5. Wolraich ML, McKeown RE, Visser SN, et al. The Prevalence of ADHD:Its Diagnosis and Treatment in Four School Districts Across Two States. Journal of Attention Disorders. 2014;18(7):563-575.
6. Polanczyk G, de Lima MS, Horta BL, Biederman J, Rohde LA. The Worldwide Prevalence of ADHD: A Systematic Review and Metaregression Analysis. American Journal of Psychiatry. 2007;164(6):942-948.
7. Willcutt EG. The prevalence of DSM-IV attention-deficit/hyperactivity disorder: a meta-analytic review. Neurotherapeutics. 2012;9(3):490-499.
8. Thomas R, Sanders S, Doust J, Beller E, Glasziou P. Prevalence of Attention-Deficit/Hyperactivity Disorder: A Systematic Review and Meta-analysis. Pediatrics. 2015;135(4):e994.
9. Rowland AS, Skipper BJ, Umbach DM, et al. The Prevalence of ADHD in a Population-Based Sample. Journal of Attention Disorders. 2015;19(9):741-754.
10. Jensen PS, Hinshaw SP, Kraemer HC, et al. ADHD Comorbidity Findings From the MTA Study: Comparing Comorbid Subgroups. Journal of the American Academy of Child & Adolescent Psychiatry. 2001;40(2):147-158.
11. Larson K, Russ SA, Kahn RS, Halfon N. Patterns of comorbidity, functioning, and service use for US children with ADHD, 2007. Pediatrics. 2011;127(3):462-470.
12. Nigg JT. Attention-deficit/hyperactivity disorder and adverse health outcomes. Clinical Psychology Review. 2013;33(2):215-228.
13. Barkley RA. Major life activity and health outcomes associated with attention-deficit/hyperactivity disorder. The Journal of clinical psychiatry. 2002;63 Suppl 12:10-15.
14. Barbaresi WJ, Colligan RC, Weaver AL, Voigt RG, Killian JM, Katusic SK. Mortality, ADHD, and Psychosocial Adversity in Adults With Childhood ADHD: A Prospective Study. Pediatrics. 2013;131(4):637.
15. Pollak Y, Dekkers TJ, Shoham R, Huizenga HM. Risk-Taking Behavior in Attention Deficit/Hyperactivity Disorder (ADHD): a Review of Potential Underlying Mechanisms and of Interventions. Current Psychiatry Reports. 2019;21(5):33.
16. Katzman MA, Bilkey TS, Chokka PR, Fallu A, Klassen LJ. Adult ADHD and comorbid disorders: clinical implications of a dimensional approach. BMC Psychiatry. 2017;17(1):302-302.
17. Mohr-Jensen C, Steinhausen HC. A meta-analysis and systematic review of the risks associated with childhood attention-deficit hyperactivity disorder on long-term outcome of arrests, convictions, and incarcerations. Clin Psychol Rev. 2016;48:32-42.
18. Knecht C, de Alvaro R, Martinez-Raga J, Balanza-Martinez V. Attention-deficit hyperactivity disorder (ADHD), substance use disorders, and criminality: a difficult problem with complex solutions. International journal of adolescent medicine and health. 2015;27(2):163-175.
19. Doshi JA, Hodgkins P, Kahle J, et al. Economic Impact of Childhood and Adult Attention-Deficit/Hyperactivity Disorder in the United States. Journal of the American Academy of Child & Adolescent Psychiatry. 2012;51(10):990-1002.e1002.
20. Klein RG, Mannuzza S, Olazagasti MAR, et al. Clinical and functional outcome of childhood attention-deficit/hyperactivity disorder 33 years later. Archives of general psychiatry. 2012;69(12):1295-1303.
21. Barkley RA, Fischer M. Hyperactive Child Syndrome and Estimated Life Expectancy at Young Adult Follow-Up: The Role of ADHD Persistence and Other Potential Predictors. Journal of Attention Disorders. 2019;23(9):907-923.
22. Pelham WE, Foster EM, Robb JA. The economic impact of attention-deficit/hyperactivity disorder in children and adolescents. Ambulatory pediatrics : the official journal of the Ambulatory Pediatric Association. 2007;7(1 Suppl):121-131.
23. Shier AC, Reichenbacher T, Ghuman HS, Ghuman JK. Pharmacological treatment of attention deficit hyperactivity disorder in children and adolescents: clinical strategies. J Cent Nerv Syst Dis. 2012;5:1-17.
24. Evans SW, Owens JS, Bunford N. Evidence-based psychosocial treatments for children and adolescents with attention-deficit/hyperactivity disorder. Journal of clinical child and adolescent psychology : the official journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53. 2014;43(4):527-551.
25. Rostain A, Jensen PS, Connor DF, Miesle LM, Faraone SV. Toward quality care in ADHD: defining the goals of treatment. J Atten Disord. 2015;19(2):99-117.
26. Gupte-Singh K, Singh RR, Lawson KA. Economic Burden of Attention-Deficit/Hyperactivity Disorder among Pediatric Patients in the United States. Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research. 2017;20(4):602-609.
27. Johnston C, Park JL. Interventions for Attention-Deficit Hyperactivity Disorder: A Year in Review. Current Developmental Disorders Reports. 2015;2(1):38-45.
28. Weiss MD, McBride NM, Craig S, Jensen P. Conceptual review of measuring functional impairment: findings from the Weiss Functional Impairment Rating Scale. Evidence-based mental health. 2018;21(4):155-164.
29. Coghill DR, Joseph A, Sikirica V, Kosinski M, Bliss C, Huss M. Correlations Between Clinical Trial Outcomes Based on Symptoms, Functional Impairments, and Quality of Life in Children and Adolescents With ADHD. J Atten Disord. 2017:1087054717723984.
30. American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, VA 2013.
31. Ustün B, Kennedy C. What is “functional impairment”? Disentangling disability from clinical significance. World Psychiatry. 2009;8(2):82-85.
32. de Schipper E, Mahdi S, Coghill D, et al. Towards an ICF core set for ADHD: a worldwide expert survey on ability and disability. European child & adolescent psychiatry. 2015;24(12):1509-1521.
33. Foy JM. Enhancing Pediatric Mental Health Care: Algorithms for Primary Care. Pediatrics. 2010;125(Supplement 3):S109.
34. Gajria K, Kosinski M, Sikirica V, et al. Psychometric validation of the Weiss Functional Impairment Rating Scale-Parent Report Form in children and adolescents with attention-deficit/hyperactivity disorder. Health and quality of life outcomes. 2015;13:184.
35. Thompson T, Lloyd A, Joseph A, Weiss M. The Weiss Functional Impairment Rating Scale-Parent Form for assessing ADHD: evaluating diagnostic accuracy and determining optimal thresholds using ROC analysis. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 2017;26(7):1879-1885.
36. Hodgkins P, Lloyd A, Erder MH, et al. Estimating minimal important differences for several scales assessing function and quality of life in patients with attention-deficit/hyperactivity disorder. CNS spectrums. 2017;22(1):31-40.