Economic burdens on parents of children with autism: a literature review

Li, Yamin

doi:10.1017/s1092852919001512

Cited by 17 publications

(9 citation statements)

References 33 publications

(33 reference statements)

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“…A conservative approach to modeling downstream costs was adopted, including only third-party payer costs of the national disability insurer for disability supports and modeled to the 13th birthday. The analysis did not incorporate broader psychosocial and economic impacts (eg, labor force participation among parents) or outcomes related to quality of life for autistic individuals or their family members . If intervention effects were maintained into and through adulthood, the cost savings would be considerably greater—noting the high support costs for autistic adults, which can include disability-based income payments .…”

Section: Discussionmentioning

confidence: 99%

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Estimated Therapy Costs and Downstream Cost Consequences of iBASIS–Video Interaction to Promote Positive Parenting Intervention vs Usual Care Among Children Displaying Early Behavioral Signs of Autism in Australia

et al. 2023

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ImportanceThe growing global prevalence of autism spectrum disorder (ASD) is associated with increasing costs for support services. Ascertaining the effects of a successful preemptive intervention for infants showing early behavioral signs of autism on human services budgets is highly policy relevant.ObjectiveTo estimate the net cost impact of the iBASIS–Video Interaction to Promote Positive Parenting (iBASIS-VIPP) intervention on the Australian government.Design, Setting, and ParticipantsInfants (aged 12 months) showing early behavioral indicators of autism were recruited through community settings into the multicenter Australian iBASIS-VIPP randomized clinical trial (RCT), a 5- to 6-month preemptive parent-mediated intervention, between June 9, 2016, and March 30, 2018, and were followed up for 18 months to age 3 years. This economic evaluation, including cost analysis (intervention and cost consequences) and cost-effectiveness analyses of iBASIS-VIPP compared with usual care (treatment as usual [TAU]), modeled outcomes observed at age 3 through to 12 years (13th birthday) and was conducted from April 1, 2021, to January 30, 2023. Data analysis was conducted from July 1, 2021, to January 29, 2023.ExposuresiBASIS-VIPP intervention.Main Outcomes and MeasuresTo project the diagnostic trajectory and associated disability support costs drawing on the Australian National Disability Insurance Scheme (NDIS), the main outcome was the differential treatment cost of iBASIS-VIPP plus TAU vs TAU and disability-related government costs modeled to age 12 years, using a clinical diagnosis of ASD and developmental delay (with autism traits) at 3 years. Costs were calculated in Australian dollars and converted to US dollars. Economic performance was measured through the following: (1) differential net present value (NPV) cost (iBASIS-VIPP less TAU), (2) investment return (dollars saved for each dollar invested, taking a third-party payer perspective), (3) break-even age when treatment cost was offset by downstream cost savings, and (4) cost-effectiveness in terms of the differential treatment cost per differential ASD diagnosis at age 3 years. Alternate values of key parameters were modeled in 1-way and probabilistic sensitivity analysis, the latter identifying the likelihood of an NPV cost savings.ResultsOf the 103 infants enrolled in the iBASIS-VIPP RCT, 70 (68.0%) were boys. Follow-up data at age 3 years were available for 89 children who received TAU (44 [49.4%]) or iBASIS-VIPP (45 [50.6%]) and were included in this analysis. The estimated mean differential treatment cost was A $5131 (US $3607) per child for iBASIS-VIPP less TAU. The best estimate of NPV cost savings was A $10 695 (US $7519) per child (discounted at 3% per annum). For each dollar invested in treatment, a savings of A $3.08 (US $3.08) was estimated; the break-even cost occurred at age 5.3 years (approximately 4 years after intervention delivery). The mean differential treatment cost per lower incident case of ASD was A $37 181 (US $26 138). We estimated that there was an 88.9% chance that iBASIS-VIPP would deliver a cost savings for the NDIS, the dominant third-party payer.Conclusions and RelevanceThe results of this study suggest that iBASIS-VIPP represents a likely good-value societal investment for supporting neurodivergent children. The estimated net cost savings were considered conservative, as they covered only third-party payer costs incurred by the NDIS and outcomes were modeled to just age 12 years. These findings further suggest that preemptive interventions may be a feasible, effective, and efficient new clinical pathway for ASD, reducing disability and the costs of support services. Long-term follow-up of children receiving preemptive intervention is needed to confirm the modeled results.

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Section: Discussionmentioning

confidence: 99%

“…The disability associated with ASD has cost implications for families 10 and may result in extra government spending on health, education, disability services, and income support. The nature and cost of support services depends on the age of the autistic individual and the level of disability.…”

Section: Introductionmentioning

confidence: 99%

Estimated Therapy Costs and Downstream Cost Consequences of iBASIS–Video Interaction to Promote Positive Parenting Intervention vs Usual Care Among Children Displaying Early Behavioral Signs of Autism in Australia

et al. 2023

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“…Compared to the general US population the study cohort also had a higher level of parental education, which is common among clinical trials 52 , and a lower household income. Lower-income may reflect reduced parental participation in the workforce as a result of participants' developmental delays 53 .…”

Section: Discussionmentioning

confidence: 99%

Evaluation of an artificial intelligence-based medical device for diagnosis of autism spectrum disorder

Megerian

Dey

Melmed³

et al. 2022

npj Digit. Med.

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Autism spectrum disorder (ASD) can be reliably diagnosed at 18 months, yet significant diagnostic delays persist in the United States. This double-blinded, multi-site, prospective, active comparator cohort study tested the accuracy of an artificial intelligence-based Software as a Medical Device designed to aid primary care healthcare providers (HCPs) in diagnosing ASD. The Device combines behavioral features from three distinct inputs (a caregiver questionnaire, analysis of two short home videos, and an HCP questionnaire) in a gradient boosted decision tree machine learning algorithm to produce either an ASD positive, ASD negative, or indeterminate output. This study compared Device outputs to diagnostic agreement by two or more independent specialists in a cohort of 18–72-month-olds with developmental delay concerns (425 study completers, 36% female, 29% ASD prevalence). Device output PPV for all study completers was 80.8% (95% confidence intervals (CI), 70.3%–88.8%) and NPV was 98.3% (90.6%–100%). For the 31.8% of participants who received a determinate output (ASD positive or negative) Device sensitivity was 98.4% (91.6%–100%) and specificity was 78.9% (67.6%–87.7%). The Device’s indeterminate output acts as a risk control measure when inputs are insufficiently granular to make a determinate recommendation with confidence. If this risk control measure were removed, the sensitivity for all study completers would fall to 51.6% (63/122) (95% CI 42.4%, 60.8%), and specificity would fall to 18.5% (56/303) (95% CI 14.3%, 23.3%). Among participants for whom the Device abstained from providing a result, specialists identified that 91% had one or more complex neurodevelopmental disorders. No significant differences in Device performance were found across participants’ sex, race/ethnicity, income, or education level. For nearly a third of this primary care sample, the Device enabled timely diagnostic evaluation with a high degree of accuracy. The Device shows promise to significantly increase the number of children able to be diagnosed with ASD in a primary care setting, potentially facilitating earlier intervention and more efficient use of specialist resources.

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“…Conversely, we observed that SES is a situational life/demographic factor not related with maternal stress in DS, consistently with some previous findings [ 38 ]. This finding is especially relevant considering that parents of individuals with NDDs are often at increased risk of losing their job, cutting down on hours worked, or changing jobs [ 97 , 98 , 99 , 100 , 101 ]. In particular, mothers having a lifelong care responsibility for children with NDDs are at a greater risk of unemployment or part-time employment than mothers of children without NDDs [ 102 , 103 , 104 , 105 , 106 ].…”

Section: Discussionmentioning

confidence: 99%

Parenting Stress in Mothers of Children and Adolescents with Down Syndrome

Fucà

Costanzo

Ursumando

et al. 2022

JCM

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Parenting stress has deleterious effects on parents, children, and overall family functioning. Parents of children with intellectual disability, including Down Syndrome (DS), show higher levels of parenting stress than parents of typically developing children. This research aimed to (i) evaluate parenting stress levels in a group of mothers of youths with DS using a parent-report questionnaire, (ii) identify children’s individual and clinical features associated with maternal stress, and (iii) identify specific situational life/demographics factors related to maternal stress. Seventy-eight youths with DS underwent a neuropsychological evaluation, whereas mothers completed questionnaires for the assessment of parenting stress and of the child’s emotional and behavioral problems. We found that Parent–Child Difficult Interaction was the domain with the highest percentage of clinical scores (39.7%). Both internalizing and externalizing problems correlated with maternal stress, as well as autistic symptoms. The levels of maternal stress were not associated with any socio-demographic variable. After controlling for child-related correlates of maternal stress and for mothers’ age and education level, unemployed mothers exhibited higher levels of parental distress than employed mothers. The present study highlights that unemployment is related with parenting stress and potentially amenable to policy interventions supporting parents in combining work and family care.

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Economic burdens on parents of children with autism: a literature review

Cited by 17 publications

References 33 publications

Estimated Therapy Costs and Downstream Cost Consequences of iBASIS–Video Interaction to Promote Positive Parenting Intervention vs Usual Care Among Children Displaying Early Behavioral Signs of Autism in Australia

Estimated Therapy Costs and Downstream Cost Consequences of iBASIS–Video Interaction to Promote Positive Parenting Intervention vs Usual Care Among Children Displaying Early Behavioral Signs of Autism in Australia

Evaluation of an artificial intelligence-based medical device for diagnosis of autism spectrum disorder

Parenting Stress in Mothers of Children and Adolescents with Down Syndrome

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