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Table 3 Study characteristics

From: Contributing factors to healthcare costs in individuals with autism spectrum disorder: a systematic review

Authous (Year) Country Study aim Data source Sample size
(age)
Study perspective Type of health services Costs included in the study Period of the study
        Average direct costs per person Average indirect costs per person Average total costs per person  
Jarbrink and Knapp (2001) [23] UK To estimate the economic consequences of autism in the UK Secondary analysis of data Autism with additional learning disabilities Patient
Provider
Hospital/inpatient services
Medication use
Other
OOP: $67,098
Provider spending: $221,027
NR NR Lifetime
High functioning autism OOP: NR
Provider spending: $152,717
$298,256 NR
Jarbrink (2003) [24] USA To show the major cost drivers
among children with ASD
Survey
(Respondents: parents)
N = 17
(4–10 years)
Provider Early intervention
Health services
Medication use
Provider spending: $416 NR NR Weekly
Liptak et al. (2006) [25] USA To compare healthcare expenditures between children with ASD and other children with and without disabilities Survey
(Respondents: parents)
N = 100
(< 17 years old)
Patient Home/community-based/outpatient services Hospital/inpatient services Medication use Respite care OOP: $898 NR NR Annual costs
Flanders (2007) [26] USA To compare direct costs of treatment of children with ASD, asthma, and diabetes Secondary analysis of data (California Medicaid Medical database) N = 731
(3–17 years)
Payer Hospital/inpatient services
Outpatient services
Medication use
Insurer spending: $6436 NR NR Annual costs
Jarbrink (2007) [27] UK To show the major cost drivers among children with ASD Survey
(Respondents: parents)
N = 55
(< 18 years old)
Provider Hospital/inpatient services
Home/community-based/outpatient services
Respite care
Medication use
Other
Provider spending: $3996 NR NR Annual costs
Leslie et al. (2007) [28] USA To examine the healthcare expenditures associated with ASDs in medical care settings Secondary data analysis (Administrative claims database) N = 613 (<  17 years old) Payer
Patient
Hospital/inpatient services
Outpatient services
Medication use
OOP + Insurer spending:
$8531
NR NR Annual costs
Sharpe and Baker (2007) [29] USA To identify factors associated with financial problems in families that have a child with autism Survey
(Respondents: parents and care givers)
N = 333
(< 19 years old)
Patient Hospital/inpatient services
Outpatient services
Respite care
Medication use
Other
NR NR NR Annual costs
Shimabukuro et al. (2008) [30] USA To estimate medical expenditures for children with ASD who receive employer-based health insurance Secondary analysis of data
(employer-based health insurance claims: the MarketScan research databases)
N = 3481
(1–21 years)
Payer
Patient
Hospital/inpatient services
Home/community-based/outpatient services
Respite care
Medication use
Other
OOP: $805
Insurer spending: $10,006
NR NR Annual costs
Knapp et al.
(2009) [13]
UK To estimate the costs of ASDs in the UK Secondary analysis of data Children with intellectual disability Provider Hospital/inpatient services
Respite care
Other
Provider spending: $11,946 NR NR Annual costs
Children without intellectual disability Provider spending: $30,936 NR NR
Young et al. (2009) [31] USA To examine the healthcare expenditures associated with ASDs in medical care settings. Survey N = 113
(2.5–21 years)
Patient Hospital/inpatient services
Outpatient services
Respite care
Medication use
Other
OOP: $882 NR NR Annual costs
Wang et al. (2010) [32] USA To examine trends in health care expenditures associated with ASDs in state Medicaid programs Secondary analysis of data (Medicaid data) N = 69,542
(> 17 years old)
Payer Hospital/inpatient services
Home/community-based/outpatient services
Respite care
Medication use
Other
Insurer spending:
$33,360
NR NR Annual costs
Barrett et al. (2012) [33] UK To determine family out-of-pocket expenses and productivity losses, and explore the relationship between family characteristics and costs. Randomized controlled trial N = 152
(2–4 years)
Patient
Provider
Hospital/inpatient services
Home/community-based/outpatient services
Respite care
Medication use
Other
OOP: $446
Provider spending: $2240
$539 $3792 6 months
Parish et al. (2012) [34] USA To investigate the association between state Medicaid spending for children with disabilities and the financial burden reported by families of children with autism. Secondary analysis of data (National Survey of Children with Special Healthcare Needs) N = 2082
(<  18 years old)
Patients NR OOP: $690 NR NR Annual costs
Peacock et al. (2012) [10] USA To compare medical expenditures between children with ASDs and without ASDs Secondary analysis of data (Health insurance claims: MarketScan Medicaid Multi-State Databases) N = 8398
(2–17 years)
Payer Hospital/inpatient services
outpatient services
Medication use
Insurer spending:
$14,777
NR NR Annual costs
Wang et al. (2012) [35] China To determine the health expenses incurred by families of children with ASD and those expenses in relation to total patient income and expenditures Survey (Respondents: parents) N = 290
(1–15 years)
Patient Home/community-based/outpatient services
Respite care
Medication use
Other
OOP: $2936 NR NR Annual costs
Al-Farsi et al. (2013) [36] Oman To measure medical expenditures in children with ASDs Survey (Respondents: parents) N = 150
(< 15 years old)
Patient Home/community-based/outpatient services
Respite care
Medication use
Other
OOP:$346 $961 NR Monthly
Van Steensel et al. (2013) [37] USA To measure the societal
costs of children with high-functioning ASD and comorbid
anxiety disorder(s)
Survey (Respondents: parents) N = 194
(7–18 years)
Patient Home/community-based/outpatient services
Respite care
Medication use
Other
OOP: $16,806 NR NR Annual costs
Raz et al. (2013) [38] Israel To measure the level of OOP expenditure for health services by families with autistic children Survey (Respondents: parents) N = 204
(4–10 years)
Patient Home/community-based/outpatient services
Respite care
Medication use
Other
OOP: $9930 NR NR Annual costs
Buescher et al. (2014) [9] UK To estimate lifetime societal economic costs among individuals with ASD NR NR Patient Medical services Adults with ID: $8738
Adults without ID:$27,265
NR NR Annual costs
NR Patient Medical services Children with ID:$1578
Children without ID: $1030
NR NR Annual costs
USA NR Patient Medical services Adults with ID: $32,630
Adults without ID:$16,316
NR NR Annual costs
NR Patient Medical Children with ID: $18,645
Children without ID: $9323
NR NR Annual costs
Horlin et al. (2014) [14] Australia To compare expenses between families whose children receiving immediate versus delayed diagnoses Survey (Respondents: parents) N = 521
(< 18 years old)
Patient All healthcare OOP: $6937 30,422
(loss of income of the parents
and caregivers)
35,593 Annual costs
Lavelle et al. (2014) [12] USA To estimate the associations between ASD diagnoses and service use, caregiver time, and cost outcomes Secondary analysis of data (National Health Interview Survey) and a study-specific survey N = 258
(3–17 years old)
Patient
Payer
Hospital/inpatient services
Home/community-based/outpatient services
Respite care
Medication use
Other
Insurer spending: $3618
OOP: $218
NR NR Annual costs
Thomas et al. (2014) [39] USA To investigate the association between school transition age and healthcare expenditures for children with ASD Secondary analysis of data (Pooled data from the Medical Expenditure Panel Survey) N = 337
(<  21 years old)
Patient All healthcare Median OOP:
$490
NR NR Annual costs
Barrett et al. (2015) [40] UK To describe the services and associated costs for individual with ASD and Cohort of adolescents with ASD and other special needs N = 51(adolescents with autistic disorder)
(9–14 years)
Provider Hospital/inpatient services
Home/community-based/outpatient services
Respite care
Medication use
Other
Provider spending: $1231 NR NR 6 months
N = 45 (adolescents with other ASDs)
(9–14 years)
Provider spending: $1999 NR NR
Byford et al. (2015) [41] UK To investigate the cost-effectiveness of a communication-focused therapy for pre-school children with ASD Cohort study N = 77 (PACT+ treatment as usual)
(2–4 years)
Provider
Patient
Hospital/inpatient services
Home/community-based/outpatient services
Respite care
Medication use
Other
OOP: $2896
Provider spending: $16,523
$1223 $20,645 13 months
N = 75 (treatment as usual)
(2–4 years)
Provider
Patient
OOP: $1990
Provider spending: $5180
$842 $7923
Parish et al. (2015) [42] USA To investigate the relationship between family financial burden and children’s health Secondary analysis of data (Pooled 2000–2009 Medical Expenditure Panel Survey data) N = 316
(<  18 years old)
Patient NR OOP: $904 NR NR Annual costs
Thomas et al. (2016) [43] USA To examine expenditures according to types of health insurance included private alone, Medicaid alone, and combined private and wrap-around Medicaid Secondary analysis of data (Pooled data from the Medical Expenditure Panel Survey) N = 346
(< 18 years old)
Patient Hospital/inpatient services
Home/community-based/outpatient services
Respite care
Medication use
Other
OOP for Medicaid insured children: $156
OOP for private insured children: $1579
Medicaid spending:
$8383
Private insurance spending: $3736
NR NR Annual costs
Barry et al. (2017) [44] USA To measure whether implementing autism mandates altered service use or spending among commercially insured children with ASD Secondary analysis of data (Health insurance claim: Data from three national insurers) N = 106,977
(< 21 years old)
Payer Hospital/inpatient services
Home/community-based/outpatient services
Respite care
Medication use
Other
Mandate eligible: $767
Mandate ineligible: $600
NR NR Monthly
Chang et al. (2018) [45] Taiwan To compare the differences in dental utilization and expenditure between children and adolescents with and without ASD Secondary analysis of data (Health insurance claim: The database of the National Health Research Institutes) N = 1305
(< 18 years old)
Payer Dental treatment Insurer spending: $110 NR NR Annual costs
Vohra et al. (2017) [46] USA To investigate the prevalence and association of comorbidities with healthcare utilization and expenditures of fee-for service enrolled adults with and without ASD Secondary analysis of data (Health insurance claim: Medicaid data) N = 1772
(22–64 years)
Payer Hospital/inpatient services
Home/community-based/outpatient services
Respite care
Medication use
Other
Insurer spending:
$16,928
NR NR Annual costs
Candon et al. (2019) [47] USA To investigate whether mandates have heterogeneous effects on healthcare expenditure by insures and individuals with ASD Secondary analysis of data (Health insurance claim) N = 106,977 (< 21 years old) Patient Payer NR OOP: $124
Insurer spending: $453
NR NR Monthly
Hong et al. (2019) [48] South Korea To estimate the economic burden of ASD in South Korea Secondary analysis of data (Health insurance claim: The National Health Insurance Service) N = 5653
(1–89 years)
Patient Hospital/inpatient services
Home/community-based/outpatient services
NR NR $2496 Annual costs
Li et al. (2019) [49] Taiwan To examine the cost and utilization of rehabilitation resources among children with ASD Secondary analysis of data (Health insurance claim: The National Health Insurance Research Database) N = 3227
(3–12 years)
Payer Home/community-based/outpatient services Insurer spending: $2100 NR NNRM Annual costs
Roddy and O’Neill (2019) [50] Ireland To measure the societal cost of childhood ASDs Survey (Respondents: parents) N = 222
(2–18 years)
Patient Hospital/inpatient services
Home/community-based/outpatient services
Respite care
Medication use
Other
OOP: $2756 NR NR Annual costs
Zerbo et al. (2019) [11] USA To compare healthcare utilization patterns and cost among insured adults with ASD, adults with ADHD and adults with neither condition Secondary analysis of data (Administrative claim data: The Kaiser Permanente Northern California (KPNC) database N = 1507
(> 18 years)
Provider Hospital/inpatient services
Home/community-based/outpatient services
Respite care
Other
Provider spending: $7889 NR NNRM Annual costs
Zuvekas et al. (2021) [51] USA To estimate healthcare costs for US children with ASD Secondary analysis of data (Two different surveys) N = 45,944
(3–17 years)
Patient Hospital/inpatient services
Home/community-based/outpatient services
Respite care
Medication use
Other
Medical Expenditure Panel Survey (MEPS: $4163
National Health Interview Survey (NHIS): $5955
NR NR Annual costs
Höfer et al. (2022) [52] Germany To estimate health service use and associated costs in children, adolescents and adults with ASD with and without intellectual disability Survey (Respondents: parents) N = 385
(4–67 years)
Patients Hospital/inpatient services
Home/community-based/outpatient services
Respite care
Other
$4208 NR NR Annual costs
Ames et al. (2021) [53] USA To calculate healthcare service utilization and cost among transition-age youth with ASD and other special healthcare needs Secondary analysis of data (Administrative claim: Kaiser Permanente Northern California) N = 4123
(14–25 years)
Provider Hospital/inpatient services
Home/community-based/outpatient services
Respite care
Medication use
Other
Provider spending: $5302 NR NR Annual costs
  1. All costs are in U.S. dollars and are adjusted to reflect 2021 USD
  2. ADHD Attention-Deficit and Hyperactivity Disorder; ASD Autism spectrum disorder; NR Not reported; UK United Kingdom; USA United States of America; OPP out of pocket payment