The Socio-Economic Burden on Caregivers of Pediatric Autistic Population in Europe: A Systematic Review

Author(s)

Johri S1, Y G K2, Joshi M2
1Syneos Health, Ghaziabad, UP, India, 2Syneos Health, Gurugram, Haryana, India

OBJECTIVES: Autism Spectrum disorder (ASD) affects perception, abilities, and social behavior among pediatrics, imposing dynamic burden on caregivers. This review aims to assess the social and economic burden on the caregivers of children with ASD in Europe.

METHODS: The review was conducted as per PRISMA. PubMed and Embase databases were searched and supplemented with bibliographic searches.

RESULTS: Overall, 13 citations were included. Different dimensions of caregiver-burden were assessed using scales viz., Carer-related quality-of-life (CarerQoL), Role of the Father Questionnaire (ROFQ), and Parent’s QoL. CarerQoL mean utility and happiness scores were 77.33 and 7.56, respectively. Majorly, 84% of primary caregivers reported problematic relationships with care-recipients, however 96% reported deriving a sense of fulfillment while caring for them. Moderate-to-high levels of stress were observed among caregivers of children with ASD, along with significant impact on physical (51%) and mental health (46%). The challenging behavior of children with ASD was positively correlated (0.35) with father’s burden (p<0.01), as per ROFQ. Compared to fathers, mothers of children with ASD were less likely to engage in full-time employment (79% vs. 11%, p<0.001). Parents accounted for 67% of the societal costs indicating a significant economic burden compared to state. The annual mean Out-Of-Pocket (OOP) expenditure was €9,489.60 per-family and varied as per disease severity. Families with children of level 2 and 3 ASD severity had €3,100.48 and €4,396.64 more OOP expenditure, respectively than the families with children of level 1 severity. Health services costs rose by €213 as child grew old by one-year. Lack of professional intervention and reduced family income due to COVID-19 restrictions further exacerbated the caregiver burden.

CONCLUSIONS: Caregivers of children with ASD face multifaceted challenges requiring the need for comprehensive support. Reforms and policies that may ensure equitable access to healthcare services and minimize the financial strain on families are urgently warranted.

Conference/Value in Health Info

2023-11, ISPOR Europe 2023, Copenhagen, Denmark

Value in Health, Volume 26, Issue 11, S2 (December 2023)

Code

PCR231

Topic

Economic Evaluation, Patient-Centered Research

Topic Subcategory

Patient Behavior and Incentives, Patient-reported Outcomes & Quality of Life Outcomes, Work & Home Productivity - Indirect Costs

Disease

Mental Health (including addition), Neurological Disorders, Pediatrics

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