Economic Burden of ASD

Background: Getting a better understanding of costs associated with ASD can help decision makers weigh the relative merits of different ways to utilize, prioritize and allocate available resources. Costing information is also valuable for planning longer-term projections of the resources needed to support people with ASD under a range of alternative scenarios.

Objectives: To estimate current annual economic burden related to ASD in Europe.

Methods: A bottom-up approach was used to estimate the cost-of-illness in 12 European countries (Austria, Belgium, Bulgaria, Denmark, France, Ireland, Italy, Poland, Portugal, Romania, Spain and UK), collecting data directly from individuals with ASD and their families through a web-based survey. We used the “prevalence-based method” to estimate the current annual economic burden of ASD in each country from the societal perspective, i.e. including direct and indirect costs. Direct costs comprised education services, inpatient hospital services, residential respite care and other health and social care services. Indirect costs were based on lost productivity due to morbidity in persons with ASD and due to cessation or reduction of working time by the informal caregivers (parents or other).

Data on services utilization were gathered through an anonymous web-based questionnaire formed by 38 questions, translated from English to 11 languages and adapted according to the particular features of the healthcare and education system of each country. The survey was launched in most of the countries in February 2017 and it is still on-going.

Results: By September 2017 we collected 1,367 complete responses, mostly from Italy (276), Spain (257) and France (245). The mean age of individuals with ASD described by respondents was 16.2 years and 55% of them were male. Responders were mostly parents (61% of responses), although persons with ASD also responded in some cases (8%).

Among health and social services, the services mostly used were from psychiatrists (40% in Belgium, 36% in Poland), psychologists (37% in France, 32% in Spain), general practitioners (30-40% in all countries) and speech and occupational therapists (15-30% in all countries). Among special educational services, the most commonly used services were from educational psychologists (47% in Spain, 36% in Italy), classroom assistants (34% in Spain, 31% in France), specialist teachers (58% in Italy, 39% in Portugal) and speech and language therapists at school (34% in Portugal, 30% in Poland). All surveyed resources were assigned a unit cost in local currency and a total annual cost per patient will be estimated.

Only a small part of adult individuals with ASD were currently employed (paid or unpaid). Absences from work will be evaluated and together with production losses and informal costs of care provided by unpaid caregivers will form the indirect cost per patient. Finally, total annual cost per patient will be calculated, which will be combined with prevalence data in each country to obtain the ASD economic burden.

Conclusions: This cost-of-illness study provides valuable information on economic burden of ASD across Europe, based on individual data using the bottom-up approach.