Family Burden of Raising a Child with ADHD

Abstract

The purpose of the study was to estimate the burden to families of raising a child with attention-deficit/hyperactivity disorder (ADHD). Data were drawn from a longitudinal sample recruited in western Pennsylvania. When participants were between 14 and 17 years old, parents completed a questionnaire assessing economic burden over the course of raising their children. Domains of economic burden to families included direct costs related to child’s behaviors (excluding treatment expenses) and indirect costs related to caregiver strain. On average, participants with ADHD incurred a total economic burden over the course of child development that was more than five times greater compared to youths without ADHD (ADHD = $15,036 per child, Control = $2,848 per child), and this difference remained significant after controlling for intellectual functioning, oppositional defiant symptoms, or conduct problems. Parents of participants with ADHD were more likely to have changed their job responsibilities or been fired and reported lower work efficiency. The current evaluation of economic burden to individual families extends previous estimates of annual societal cost of illness (COI) of ADHD. Our rough annual estimate of COI for ADHD in children and adolescents is $124.5 billion (2017 US Dollars). Findings underscore the need for interventions to reduce the costly dysfunctional outcomes in families of children with ADHD.

This is a preview of subscription content, log in to check access.

Fig. 1

Notes

  1. 1.

    Although the negative binomial model (NB) (Model 1) has better fit statistics than the zero-inflated negative binomial model (ZINB) (Model 2) (BIC-corrected Vuong z = 1.67, p = 0.05) (Desmarais and Harden 2013), results from ZINB were presented to account for zero-inflation and measurement errors.

  2. 2.

    The ZINB has two parts: (a) a logistic regression to predict the presence of any excessive zero economic burden (i.e., whether burden > 0) and (b) a negative binomial model to predict total monetary burden, conditional on burden being present. In contrast, in hurdle models, all zeroes come from one “structural” source (i.e., all zeroes suggested that families experienced zero monetary burden in the given categories). The ZINB was chosen because zeroes in our dataset included families who reported zeroes due to recall errors (e.g., some caregivers had difficulty remembering the costs across the entire 14 to 17 years assessed in the survey), as well as the families who actually experienced zero monetary burden in the given categories.

References

  1. Altszuler, A. R., Page, T. F., Gnagy, E. M., Coxe, S., Arrieta, A., Molina, B. S., & Pelham, W. E., Jr. (2016). Financial dependence of young adults with childhood ADHD. Journal of Abnormal Child Psychology, 44(6), 1217–1229. https://doi.org/10.1007/s10802-015-0093-9.

    Article  PubMed  PubMed Central  Google Scholar 

  2. American Psychiatric Association. (1987). Diagnostic and statistical manual of mental disorders (3rd ed., revised). Washington, DC: American Psychiatric Association.

  3. Anderson, J. C., Williams, S., McGee, R., & Silva, P. A. (1987). DSM-III disorders in preadolescent children: prevalence in a large sample from the general population. Archives of General Psychiatry, 44(1), 69–76.

    Article  Google Scholar 

  4. Barkley, R. A. (2014). Attention-deficit hyperactivity disorder: A handbook for diagnosis and treatment. New York: Guilford.

    Google Scholar 

  5. Bauermeister, J. J. (2016). Parental behavior training and Latino/Hispanic children with ADHD and/or disruptive behaviors. The ADHD Report, 24(8), 9–14.

    Article  Google Scholar 

  6. Beecham, J. (2014). Annual research review: Child and adolescent mental health interventions: A review of progress in economic studies across different disorders. Journal of Child Psychology and Psychiatry, 55(6), 714–732. https://doi.org/10.1111/jcpp.12216.

    Article  PubMed  Google Scholar 

  7. Bernfort, L., Nordfeldt, S., & Persson, J. (2008). ADHD from a socio-economic perspective. Acta Paediatrica, 97(2), 239–245. https://doi.org/10.1111/j.1651-2227.2007.00611.x.

    Article  PubMed  Google Scholar 

  8. Birnbaum, H. G., Kessler, R. C., Lowe, S. W., Secnik, K., Greenberg, P. E., Leong, S. A., & Swensen, A. R. (2005). Costs of attention deficit-hyperactivity disorder (ADHD) in the US: excess costs of persons with ADHD and their family members in 2000. Current Medical Research and Opinion, 21(2), 195–206. https://doi.org/10.1185/030079904X20303.

    Article  PubMed  Google Scholar 

  9. Bornstein, M. H., Putnick, D. L., Costlow, K. M., & Suwalsky, J. T. (2018). Retrospective report revisited: long-term recall in European American mothers moderated by developmental domain, child age, person, and metric of agreement. Applied Developmental Science, 1–21. https://doi.org/10.1080/10888691.2018.1462090

  10. Brannan, A. M., & Heflinger, C. A. (2001). Distinguishing caregiver strain from psychological distress: Modeling the relationships among child, family, and caregiver variables. Journal of Child and Family Studies, 10(4), 405–418. https://doi.org/10.1023/A:1016705306848.

    Article  Google Scholar 

  11. Brewin, C. R., Andrews, B., & Gotlib, I. H. (1993). Psychopathology and early experience: a reappraisal of retrospective reports. Psychological Bulletin, 113(1), 82–98.

    Article  Google Scholar 

  12. Buescher, A. V., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatrics, 168(8), 721–728. https://doi.org/10.1001/jamapediatrics.2014.210.

    Article  Google Scholar 

  13. Bussing, R., Gary, F. A., Mason, D. M., Leon, C. E., Sinha, K., & Garvan, C. W. (2003). Child temperament, ADHD, and caregiver strain: exploring relationships in an epidemiological sample. Journal of the American Academy of Child & Adolescent Psychiatry, 42(2), 184–192. https://doi.org/10.1097/00004583-200302000-00012.

    Article  Google Scholar 

  14. Bussing, R., Meyer, J., Zima, B. T., Mason, D. M., Gary, F. A., & Garvan, C. W. (2015). Childhood ADHD symptoms: association with parental social networks and mental health service use during adolescence. International Journal of Environmental Research and Public Health, 12(9), 11893–11909. https://doi.org/10.3390/ijerph120911893.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Calhoun, P. (2013). Exact: unconditional exact test. R package Version, 1.

  16. Cook, R. D. (1977). Detection of influential observation in linear regression. Technometrics, 19(1), 15–18.

    Google Scholar 

  17. De Ridder, A., & De Graeve, D. (2006). Healthcare use, social burden and costs of children with and without ADHD in Flanders, Belgium. Clinical Drug Investigation, 26(2), 75–90.

    Article  Google Scholar 

  18. Desmarais, B. A., & Harden, J. J. (2013). Replication data for: Testing for zero-inflation in count models: Bias correction for the Vuong Test (Publication no. hdl/1902.1/21966). Retrieved March 29, 2017 from Harvard Dataverse http://hdl.handle.net/1902.1/21966.

  19. Dong, Y., & Peng, C.-Y. J. (2013). Principled missing data methods for researchers. SpringerPlus, 2, 222. https://doi.org/10.1186/2193-1801-2-222.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Doshi, J. A., Hodgkins, P., Kahle, J., Sikirica, V., Cangelosi, M. J., Setyawan, J., et al. (2012). Economic impact of childhood and adult attention-deficit/hyperactivity disorder in the United States. Journal of the American Academy of Child & Adolescent Psychiatry, 51(10), 990–1002.e1002. https://doi.org/10.1016/j.jaac.2012.07.008.

    Article  Google Scholar 

  21. Evans, S. W., Owens, J. S., Wymbs, B. T., & Ray, A. R. (2018). Evidence-based psychosocial treatments for children and adolescents with attention deficit/hyperactivity disorder. Journal of Clinical Child & Adolescent Psychology, 47(2), 157–198.

    Article  Google Scholar 

  22. Fabiano, G. A., Pelham, W. E. Jr., Waschbusch, D. A., Gnagy, E. M., Lahey, B. B., Chronis, A. M., Onyango, A. N., Kipp, H., Lopez-Williams, A., Burrows-MacLean, L. (2006). A practical measure of impairment: Psychometric properties of the Impairment Rating Scale in samples of children with attention deficit hyperactivity disorder and two school-based samples. Journal of Clinical Child & Adolescent Psychology, 35(3), 369–385.

    Article  Google Scholar 

  23. Federal Reserve Board. (2017). Report on the economic well-being of U.S. households in 2016. Washington, DC: Federal Reserve Board Publications.

    Google Scholar 

  24. Fletcher, J., & Wolfe, B. (2009). Long-term consequences of childhood ADHD on criminal activities. The Journal of Mental Health Policy and Economics, 12(3), 119–138.

    PubMed  PubMed Central  Google Scholar 

  25. Flood, E., Gajria, K., Sikirica, V., Dietrich, C. N., Romero, B., Harpin, V., Banaschewski, T., Quintero, J., Erder, M. H., Fridman, M., & Chen, K. (2016). The caregiver perspective on Paediatric ADHD (CAPPA) survey: understanding sociodemographic and clinical characteristics, treatment use and impact of ADHD in Europe. Journal of Affective Disorders, 200, 222–234. https://doi.org/10.1016/j.jad.2016.04.011.

    Article  PubMed  Google Scholar 

  26. Fridman, M., Banaschewski, T., Sikirica, V., Quintero, J., Erder, M. H., & Chen, K. S. (2017). Factors associated with caregiver burden among pharmacotherapy-treated children/adolescents with ADHD in the caregiver perspective on pediatric ADHD survey in Europe. Neuropsychiatric Disease and Treatment, 13, 373–386. https://doi.org/10.2147/NDT.S121391.

    Article  PubMed  PubMed Central  Google Scholar 

  27. Friedenreich, C. M. (1994). Improving long-term recall in epidemiologic studies. Epidemiology, 5, 1–4.

    Article  Google Scholar 

  28. Ganz, M. L. (2007). The lifetime distribution of the incremental societal costs of autism. Archives of Pediatrics and Adolescent Medicine, 161(4), 343–349.

    Article  Google Scholar 

  29. Gardner, W., Mulvey, E. P., & Shaw, E. C. (1995). Regression analyses of counts and rates: poisson, overdispersed poisson, and negative binomial models. Psychological Bulletin, 118(3), 392–404.

    Article  Google Scholar 

  30. Greenberg, P. E., Fournier, A.-A., Sisitsky, T., Pike, C. T., & Kessler, R. C. (2015). The economic burden of adults with major depressive disorder in the United States (2005 and 2010). The Journal of Clinical Psychiatry, 76(2), 155–162.

    Article  Google Scholar 

  31. Gupte-Singh, K., Singh, R. R., & Lawson, K. A. (2017). Economic burden of attention-deficit/hyperactivity disorder among pediatric patients in the United States. Value in Health, 20(4), 602–609. https://doi.org/10.1016/j.jval.2017.01.007.

    Article  PubMed  Google Scholar 

  32. Hakkaart-van Roijen, L., Zwirs, B. W., Bouwmans, C., Tan, S. S., Schulpen, T. W., Vlasveld, L., & Buitelaar, J. K. (2007). Societal costs and quality of life of children suffering from attention deficient hyperactivity disorder (ADHD). European Child and Adolescent Psychiatry, 16(5), 316–326. https://doi.org/10.1007/s00787-007-0603-6.

    Article  PubMed  Google Scholar 

  33. Harpin, V. A. (2005). The effect of ADHD on the life of an individual, their family, and community from preschool to adult life. Archives of Disease in Childhood, 90(Suppl 1), i2–i7. https://doi.org/10.1136/adc.2004.059006.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Hilbe, J. (2011). Negative binomial regression. Cambridge: Cambridge University Press. https://doi.org/10.1017/CBO9780511973420.

    Google Scholar 

  35. Hintze, J. L., & Nelson, R. D. (1998). Violin plots: A box plot-density trace synergism. The American Statistician, 52(2), 181–184. https://doi.org/10.1080/00031305.1998.10480559.

    Article  Google Scholar 

  36. Jackman, S. (2008). pscl: classes and methods for R developed in the Political Science Computational Laboratory: Stanford University. Department of Political Science, Stanford University, Stanford, California. R package version 0.95. Retrieved March 29, 2017, URL http://CRAN.R-project.org/package=pscl.

  37. Jo, C. (2014). Cost-of-illness studies: concepts, scopes, and methods. Clinical and Molecular Hepatology, 20(4), 327–337. https://doi.org/10.3350/cmh.2014.20.4.327.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Johnston, C., & Mash, E. J. (2001). Families of children with attention-deficit/hyperactivity disorder: review and recommendations for future research. Clinical Child and Family Psychology Review, 4(3), 183–207.

    Article  Google Scholar 

  39. Kuriyan, A. B., Pelham, W. E., Jr., Molina, B. S., Waschbusch, D. A., Sibley, M. H., & Gnagy, E. M. (2014). Concordance between parent and physician medication histories for children and adolescents with attention-deficit/hyperactivity disorder. Journal of Child and Adolescent Psychopharmacology, 24(5), 269–274.

    Article  Google Scholar 

  40. Lahey, B. B., Pelham, W. E., Stein, M. A., Loney, J., Trapani, C., Nugent, K., et al. (1998). Validity of DSM-IV attention-deficit/hyperactivity disorder for younger children. Journal of the American Academy of Child & Adolescent Psychiatry, 37(7), 695–702.

    Article  Google Scholar 

  41. Larsson, H., Sariaslan, A., Langstrom, N., D'Onofrio, B., & Lichtenstein, P. (2014). Family income in early childhood and subsequent attention deficit/hyperactivity disorder: a quasi-experimental study. Journal of Child Psychology and Psychiatry, 55(5), 428–435. https://doi.org/10.1111/jcpp.12140.

    Article  PubMed  Google Scholar 

  42. Lavelle, T. A., Weinstein, M. C., Newhouse, J. P., Munir, K., Kuhlthau, K. A., & Prosser, L. A. (2014). Economic burden of childhood autism spectrum disorders. Pediatrics, 133(3), e520–e529.

    Article  Google Scholar 

  43. Lydersen, S., Fagerland, M. W., & Laake, P. (2009). Recommended tests for association in 2 x 2 tables. Statistics in Medicine, 28(7), 1159–1175. https://doi.org/10.1002/sim.3531.

    Article  PubMed  Google Scholar 

  44. Marks, D. J., Mlodnicka, A., Bernstein, M., Chacko, A., Rose, S., & Halperin, J. M. (2009). Profiles of service utilization and the resultant economic impact in preschoolers with attention deficit/hyperactivity disorder. Journal of Pediatric Psychology, 34(6), 681–689. https://doi.org/10.1093/jpepsy/jsn112.

    Article  PubMed  Google Scholar 

  45. Matza, L. S., Paramore, C., & Prasad, M. (2005). A review of the economic burden of ADHD. Cost Effectiveness and Resource Allocation, 3, 5. https://doi.org/10.1186/1478-7547-3-5.

    Article  PubMed  Google Scholar 

  46. Mehrotra, D. V., Chan, I. S. F., & Berger, R. L. (2003). A cautionary note on exact unconditional inference for a difference between two independent binomial proportions. Biometrics, 59(2), 441–450. https://doi.org/10.1111/1541-0420.00051.

    Article  PubMed  Google Scholar 

  47. Meyers, J., Classi, P., Wietecha, L., & Candrilli, S. (2010). Economic burden and comorbidities of attention-deficit/hyperactivity disorder among pediatric patients hospitalized in the United States. Child and Adolescent Psychiatry and Mental Health, 4(1), 31.

    Article  Google Scholar 

  48. Moon, R. J., Lim, A., Farmer, M., Segaran, A., Clarke, N. M., Harvey, N. C., et al. (2016). Validity of parental recall of children’s fracture: implications for investigation of childhood osteoporosis. Osteoporosis International, 27(2), 809–813.

    Article  Google Scholar 

  49. Pelham III W. E., Page T. F., Altszuler, A. R., Gnagy, E. M., & Pelham Jr W. E. (under review). The Long-term financial outcome of children diagnosed with ADHD: a prospective, longitudinal, case-control study.

  50. Pelham, W. E., Jr., & Lang, A. R. (1993). Parental alcohol consumption and deviant child behavior: laboratory studies of reciprocal effects. Clinical Psychology Review, 13(8), 763–784.

    Article  Google Scholar 

  51. Pelham, W. E., Jr., Gnagy, E. M., Greenslade, K. E., & Milich, R. (1992). Teacher ratings of DSM-III-R symptoms for the disruptive behavior disorders. Journal of the American Academy of Child & Adolescent Psychiatry, 31(2), 210–218. https://doi.org/10.1097/00004583-199203000-00006.

    Article  Google Scholar 

  52. Pelham, W. E., Jr., Lang, A. R., Atkeson, B., Murphy, D. A., Gnagy, E. M., Greiner, A. R., et al. (1997). Effects of deviant child behavior on parental distress and alcohol consumption in laboratory interactions. Journal of Abnormal Child Psychology, 25(5), 413–424.

    Article  Google Scholar 

  53. Pelham, W. E., Jr., Fabiano, G. A., & Massetti, G. M. (2005). Evidence-based assessment of attention deficit hyperactivity disorder in children and adolescents. Journal of Clinical Child & Adolescent Psychology, 34(3), 449–476. https://doi.org/10.1207/s15374424jccp3403_5.

    Article  Google Scholar 

  54. Pelham, W. E., Jr., Foster, E. M., & Robb, J. A. (2007). The economic impact of attention-deficit/hyperactivity disorder in children and adolescents. Ambulatory Pediatrics, 7(1 Suppl), 121–131. https://doi.org/10.1016/j.ambp.2006.08.002.

    Article  PubMed  Google Scholar 

  55. Pilapil, M., Coletti, D. J., Rabey, C., & DeLaet, D. (2017). Caring for the caregiver: supporting families of youth with special health care needs. Current Problems in Pediatric and Adolescent Health Care, 47(8), 190–199. https://doi.org/10.1016/j.cppeds.2017.07.003.

    Article  PubMed  Google Scholar 

  56. R Core Team (2016). R: A language and environment for statistical computing. Vienna: R Foundation for Statistical Computing. URL https://www.R-project.org/.

  57. Richters, J. E. (1992). Depressed mothers as informants about their children: a critical review of the evidence for distortion. Psychological Bulletin, 112(3), 485–499.

    Article  Google Scholar 

  58. Robb, J. A., Sibley, M. H., Pelham, W. E., Jr., Foster, E. M., Molina, B. S., Gnagy, E. M., & Kuriyan, A. B. (2011). The estimated annual cost of ADHD to the U.S. education system. School Mental Health, 3(3), 169–177. https://doi.org/10.1007/s12310-011-9057-6.

    Article  PubMed  PubMed Central  Google Scholar 

  59. Sales, E. (2003). Family burden and quality of life. Quality of Life Research, 12(1), 33–41. https://doi.org/10.1023/a:1023513218433.

    Article  PubMed  Google Scholar 

  60. Shaffer, D., Fisher, P., Lucas, C. P., Dulcan, M. K., & Schwab-Stone, M. E. (2000). NIMH diagnostic interview schedule for children version IV (NIMH DISC-IV): description, differences from previous versions, and reliability of some common diagnoses. Journal of the American Academy of Child and Adolescent Psychiatry, 39(1), 28–38. https://doi.org/10.1097/00004583-200001000-00014.

    Article  PubMed  Google Scholar 

  61. Shin, S. H., & Brown, T. A. (2009). Racial and ethnic disparities in caregiver strain and the use of child mental health services: a structural equation model. Psychiatric Services, 60(8), 1039–1045.

    Article  Google Scholar 

  62. Sibley, M. H., Pelham, W. E., Jr., Molina, B. S. G., Gnagy, E. M., Waschbusch, D. A., Biswas, A., et al. (2011). The delinquency outcomes of boys with ADHD with and without comorbidity. Journal of Abnormal Child Psychology, 39(1), 21–32. https://doi.org/10.1007/s10802-010-9443-9.

    Article  PubMed  PubMed Central  Google Scholar 

  63. Stata Corp (2015). Statistical Software: Release 14. College Station: Stata Corp LP.

  64. Theule, J., Wiener, J., Tannock, R., & Jenkins, J. M. (2010). Parenting stress in families of children with ADHD. Journal of Emotional and Behavioral Disorders, 21(1), 3–17. https://doi.org/10.1177/1063426610387433.

    Article  Google Scholar 

  65. Thompson, A. L., Molina, B. S., Pelham, W., Jr., & Gnagy, E. M. (2007). Risky driving in adolescents and young adults with childhood ADHD. Journal of Pediatric Psychology, 32(7), 745–759.

    Article  Google Scholar 

  66. U.S. Census Bureau (2017). Current Population Survey, 2016. Retrieved October 15, 2017 from http://www.bls.gov/.

  67. U.S. Department of Labor Bureau of Labor Statistics (2016) National Occupational Employment and Wage Estimates United States, 2015. Retrieved March 29, 2017 from https://www.bls.gov/oes/2015/may/oes_nat.htm#00-0000.

  68. Visser, S. N., Danielson, M. L., Bitsko, R. H., Holbrook, J. R., Kogan, M. D., Ghandour, R. M., Perou, R., & Blumberg, S. J. (2014). Trends in the parent-report of health care provider-diagnosed and medicated attention-deficit/hyperactivity disorder: United States, 2003-2011. Journal of the American Academy of Child & Adolescent Psychiatry, 53(1), 34–46 e32. https://doi.org/10.1016/j.jaac.2013.09.001.

    Article  Google Scholar 

  69. Wehmeier, P. M., Schacht, A., & Barkley, R. A. (2010). Social and emotional impairment in children and adolescents with ADHD and the impact on quality of life. Journal of Adolescent Health, 46(3), 209–217. https://doi.org/10.1016/j.jadohealth.2009.09.009.

    Article  PubMed  Google Scholar 

  70. Wymbs, B. T., Pelham, W. E., Jr., Molina, B. S., Gnagy, E. M., Wilson, T. K., & Greenhouse, J. B. (2008). Rate and predictors of divorce among parents of youths with ADHD. Journal of Consulting and Clinical Psychology, 76(5), 735–744. https://doi.org/10.1037/a0012719.

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Acknowledgments

This research was supported by a grant from the National Institute of Mental Health Grant (R01-MH-53554). Additional support was provided by grants from the National Institute of Mental Health (MH069614, MH069434, MH092466, MH065899, MH62988), the Institute of Education Sciences (R324J060024, LO30000665A, R324B060045), the National Institute of Alcohol Abuse and Alcoholism (AA11873), and the National Institute on Drug Abuse (DA12414, DA12986, T32DA039772).

Funding

This research was supported by a grant from the National Institute of Mental Health Grant (R01-MH-53554). Additional support was provided by grants from the National Institute of Mental Health (MH069614, MH069434, MH092466, MH065899, MH62988), the Institute of Education Sciences (R324J060024, LO30000665A, R324B060045), the National Institute of Alcohol Abuse and Alcoholism (AA11873), and the National Institute on Drug Abuse (DA12414, DA12986, T32DA039772).

Author information

Affiliations

Authors

Corresponding author

Correspondence to Xin Zhao.

Ethics declarations

Conflicts of Interest

The authors declare that they have no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

Additional information

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Electronic supplementary material

ESM 1

(DOC 220 kb)

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Zhao, X., Page, T.F., Altszuler, A.R. et al. Family Burden of Raising a Child with ADHD. J Abnorm Child Psychol 47, 1327–1338 (2019). https://doi.org/10.1007/s10802-019-00518-5

Download citation

Keywords

  • ADHD
  • Cost analysis
  • Family burden
  • Economic impact