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Table 3 Childhood/adolescence and adulthood, mild to moderate impairment with developmental delay/disability: condition-related annual direct health care and non-health care costs

From: A framework for assessing the lifetime economic burden of congenital cytomegalovirus in the United States

Cost component Cost estimatea,b,c Cost estimate (variability) Population Data source Source
Direct health care costs related to mild to moderate impairment with developmental delay/disability in childhood/adolescence
 Out of pocket Total, per person, ASD: $219 CI, ASD: −$7 to $359 Children 3–17 years of age with ASDb MEPS linked to the NHIS Lavelle et al. [40]
 Third-party payers Total, per person, ASD: $3629 CI, ASD: $1222 to $5118 Children 3–17 years of age with ASDb MEPS linked to the NHIS Lavelle et al. [40]
Total, per person, ID without CP: $22,788
Total, per person, CP without ID: $22,333
Total, per person, CP with ID: $61,837
Not calculatedd Children < 19 y of age with CP using ICD-9-CM code 343.xx with at least one inpatient or two outpatient visits that were > 29 days apart during the study period
Patients with a medically diagnosed ID (identified as one inpatient or one outpatient claim with an ICD-9-CM code of 317.xx-319.xx)
MarketScan Medicaid Multi-State Database Kancherla et al. [43]
Direct non-health care costs related to mild to moderate impairment with developmental delay/disability in childhood/adolescence
 Education costs Total, per person, ASD: $10,346 CI, ASD: $7925 to $12,522 Nationally representative panel of caregivers and parents of children 3–17 years of age who had a child diagnosed with ASDe Administered survey Lavelle et al. [40]
 Condition-related therapy and family-coordinated services Total, per person, ASD: $421 CI, ASD: −$91 to $1168 Nationally representative panel of caregivers and parents of children 3–17 years of age who had a child diagnosed with ASDe Administered survey Lavelle et al. [40]
 Unpaid caregiver time costs Total, per person, ASD: $6115 CI, ASD: −$2009 to $14,342 Nationally representative panel of caregivers and parents of children 3–17 years of age who had a child diagnosed with ASDe Administered survey Lavelle et al. [40]
Direct health care costs related to permanent disability in adulthood
 Out of pocket Mean: $1477 SD: $2631 Adults 21–61 years of age with self-reported functional and cognitive limitations MEPS Mitra et al. [47]
 Third-party payers Mean: $12,773 SD: $38,874 Adults 21–61 years of age with self-reported functional and cognitive limitations MEPS Mitra et al. [47]
  1. ASD, autism spectrum disorder; CP, cerebral palsy; CPI, Consumer Price Index; ICD-9-CM, International Classification of Diseases, 9th Revision, Clinical Modification; ID, intellectual disability; MEPS, Medical Expenditure Panel Survey; NHIS, National Health Interview Survey; SD, standard deviation; US, United States
  2. aCost estimates are inflated to 2018 US dollars using the medical care component of the CPI [31]. Lavelle et al. [40], Kancherla et al. [43], and Mitra et al. [47] were originally presented in 2011, 2005, and 2004 US dollars, respectively
  3. bLavelle et al. [40] used the publicly available MEPS (2003-2008) linked to the NHIS (2001–2007) to estimate annual total health care expenditures incurred by children aged 3–17 years who responded affirmatively to the question, “Has a doctor or health care provider ever told you that [child’s name] has autism?” and by those in a corresponding control group. Health care utilization counted by the expenditures included all categories reported in MEPS, but out-of-pocket costs were taken from household payments only
  4. cCondition-related cost estimates from Kancherla et al. [43] were calculated by taking the difference in costs for patients with the condition versus patients in the control group. Condition-related cost estimates from Mitra et al. [47] were calculated by taking the difference in costs for disabled patients versus non-disabled patients. Condition-related cost estimates from Lavelle et al. [40] were taken from the reported regression-adjusted difference in costs for children with ASD compared with those for children without ASD
  5. dKancherla et al. [43] presented confidence intervals for the mean costs, but not for the condition-related differences reported here
  6. eLavelle et al. [40] used two surveys in 2011 to estimate non-health care expenditures from a nationally representative panel of caregivers and parents of children aged 3–17 years who have a child diagnosed with ASD and a corresponding control group. Reported tuition expenditures from all sources related to school were used to estimate education costs. Condition-related therapy and family-coordinated services include “treatments such as applied behavioral analysis, sensory integration, and communication therapies.” All other resources used to care for children are categorized as “family-coordinated services.” Unpaid caregiver time was estimated as the total time all caregivers in the child’s household spent on “activities such as coordinating their child’s therapies, homework help, and travel to appointments and activities during the previous 12 months.” Some out-of-pocket estimates for direct non-health care cost categories were reported as negative