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13 Feb 2019

Zhao X et al. J Abnorm Child Psychol 2019; Epub ahead of print

Many investigations that have assessed the family economic burden of ADHD have focused on direct expenses within the healthcare system and indirect costs related to loss of parental productivity (Birnbaum HG et al. 2005; Gupte-Singh K et al. 2017). However, non-medical expenditure is an important component of direct costs and the complex symptoms of ADHD can cause families to incur substantial costs when raising a child with ADHD. The purpose of this study was to provide an estimate of the incremental family burden associated with raising a child with ADHD compared with children without ADHD, and to estimate the incremental household financial impact (direct costs and indirect costs related to parental strain), as well as the socio-occupational burden and reduced work efficiency of caregivers.

The current study used the sample at the Pittsburgh site of ‘The Preschool Study’ (Lahey BB et al. 1998), which was a longitudinal project that examined the validity of diagnostic criteria for ADHD in young children. At baseline, patients with ADHD were diagnosed according to the Diagnostic and Statistical Manual of Mental Disorders – 3rd Edition – Revised (DSM-III-R) and age-, gender- and ethnicity-matched comparison participants without ADHD were recruited from the same school or comparable neighbourhood schools. Follow-up assessments were conducted annually until participants reached 18 years of age or until the end of the study in 2010. Parental ratings of symptoms of oppositional defiant disorder (ODD) or conduct disorder (CD) were used as covariates, rather than baseline ratings. Household burden variables were collected using retrospective parent reports about the child’s entire life on the Impact Questionnaire,* in addition to monetised burden, as well as direct and indirect costs associated with the child’s emotional and behavioural difficulties. Unmonetised burden such as socio-emotional burden§ and reduced work efficiency¥ were also assessed.

In total, 56 parents of children with ADHD and 30 parents of children without ADHD participated in the study; children were 14–17 years old when their parents assessed the economic burden of raising a child with ADHD. The total financial burden of raising a child with ADHD was over five-times higher compared with raising a child without ADHD (mean $15,036 [standard deviation (SD) $38,269] vs mean $2848 [SD $6868]; p = 0.02). Parents of children with ADHD spent significantly more money on missed activities compared with parents of children without ADHD ($49 [SD $126] vs $9 [SD $40]; p = 0.03); however, there was no statistically significant difference related to legal involvement (p = 0.75), accident/injury (p = 0.11), lost belongings (p = 0.18), damaged property (p = 0.18) or academic achievement (p = 0.72). For parents of children with ADHD, there were greater income losses due to getting fired ($3609 [SD $15,695]) and due to changes to responsibilities ($3478 [SD $10,668]); these losses were not reported by parents of children without ADHD. Expenses due to additional childcare accounted for 19.7% of total costs for parents of children with ADHD compared with 1% in the comparison group, although these differences were not significant (p = 0.16). After controlling for intelligence quotient, ODD and CD, the association between ADHD and total monetary burden remained significant (ps < 0.05).

For socio-emotional burden, more parents of children with ADHD had received mental health treatment compared with parents of children without ADHD (15% vs 0%; p = 0.04). When asked to identify a time when their child exhibited the most severe social and behavioural difficulties, 40/56 parents of children with ADHD identified a mean age of 11.45 (SD 4.24) years. For children without ADHD, 12/30 parents identified 12.13 (SD 3.80) years as the mean age when their child experienced the most difficulties. When compared with parents of children without ADHD, parents of children with ADHD reported that they spent more time unable to concentrate (p < 0.01), repeating tasks (p = 0.01), working more slowly than usual (p = 0.01), having more non–work-related conversations (p = 0.02) and feeling tired at work (p = 0.01).

There were several limitations to this study. For example, the small sample size originated entirely from the Pittsburgh metropolitan area, and the burden of childhood ADHD can be associated with a variety of socioeconomic factors, such as family income and racial/ethnic background. In addition, the incidence of parental ADHD and its associated functional impairments may have overinflated the estimates of family burden. Additionally, since data were collected from a naturalistic longitudinal sample which included families of adolescents with ADHD and those without ADHD recruited from childhood, other longitudinal follow-up studies may be able to draw causal inferences about ADHD and family burden, which was not possible from this study. Moreover, these data are based on parental retrospective reports, which could raise concerns about recall errors and cognitive biases. Finally, patients in young adulthood were not included in this study, and the authors suggested that the incremental total burden of ADHD upon families may have been more significant if this age group had been included, since young adults diagnosed with ADHD in childhood are reportedly lower earners and are more likely to depend on their parents for financial support compared with those without ADHD (Altszuler AR et al. 2016). Therefore, future studies could be strengthened by collecting prospective data across a broader timeframe.

The authors concluded that this study demonstrates that parents of children with ADHD experience substantial financial and socio-emotional burden, which has significant implications for public policy and clinical practice. The authors stated that practitioners and policymakers should promote the awareness of existing support programmes, as well as evidence-based interventions, to reduce this parental burden.

Read more about how the parents of children with ADHD are affected here

 

*Caregivers were asked to report on monetised and unmonetised burden associated with their child’s needs or behavioural difficulties, using a variety of ‘yes’/’no’, open-ended and multiple-choice questions. For example, parents were asked if they had missed work to attend school meetings about their child, and if so, how many hours, and/or if they needed additional childcare, and if so, the amount of money spent on this additional care. ADHD burden was further categorised into direct and indirect costs related to caregiver strain. These included: special education services; in-person conferences; phone call/written communication with teachers and other school staff; discipline problems at school; juvenile delinquency; accidents; injury; doctor appointments; and others. All monetary cost estimates were adjusted to 2017 dollars using the Consumer Price Index
Direct costs related to the child’s behavioural problems (excluding treatment costs) and additional services the child required, such as expenses related to academic support (e.g. educational software, tutoring and extra books) and spending due to accident and injury, including out-of-pocket payments and increases in insurance premiums. Other direct costs included lawyer and court fees if legal involvement was required
Indirect costs associated with the child’s emotional and behavioural difficulties included income loss due to being fired and changes in job responsibilities, as well as income loss from missed work and additional childcare expenses. Treatment for the parents’ mental health concerns (e.g. psychoactive medication or therapy) was also assessed
§Parents were explicitly asked if they had lost a job, changed job responsibilities, received mental health treatment, missed activities in which they would otherwise have participated, or needed additional childcare services due to their child’s behavioural problems
¥Parents were asked to identify at what age their child had the most severe social and behavioural difficulties. Questions also related to how often working parents lost concentration, repeated a task, worked more slowly than usual, had non–work-related conversations about their child, felt tired or did not get any work done. Each item was rated on a Likert scale and responses were converted to interval data using midpoint for analyses (0 = none of the time or 0 hours in an 8-hour day to 7.5 = all of the time or 7–8 hours in an 8-hour day)

Altszuler AR, Page TF, Gnagy EM, et al. Financial dependence of young adults with childhood ADHD. J Abnorm Child Psychol 2016; 44: 1217-1229.

Birnbaum HG, Kessler RC, Lowe SW, et al. Costs of attention deficit-hyperactivity disorder (ADHD) in the US: excess costs of persons with ADHD and their family members in 2000. Curr Med Res Opin 2005; 21: 195-206.

Gupte-Singh K, Singh RR, Lawson KA. Economic burden of attention-deficit/hyperactivity disorder among pediatric patients in the United States. Value Health 2017; 20: 602-609.

Lahey BB, Pelham WE, Stein MA, et al. Validity of DSM-IV attention-deficit/hyperactivity disorder for younger children. J Am Acad Child Adolesc Psychiatry 1998; 37: 695-702.

Zhao X, Page TF, Altszuler AR, et al. Family burden of raising a child with ADHD. J Abnorm Child Psychol 2019; Epub ahead of print.

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