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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