OBJECTIVES : Autism Spectrum Disorder (ASD) is a lifelong developmental disorder with a substantial clinical and humanistic burden for patients and caregivers. A systematic literature review (SLR) was conducted to provide a comprehensive review of instruments that have been used to measure the humanistic burden of ASD in the US, France, UK, Germany, Italy and Spain. We focus on the impact of ASD on caregiver quality of life (QoL).

METHODS : The literature search was conducted on July 24^th 2019, for the period 2014-2019 to identify instruments used to capture humanistic burden. Inclusion criteria were pediatric population (2 to <18 years), US and EU-5 and original articles in English language. Records focusing on caregivers QoL were selected in this analysis.

RESULTS : A total of 64 studies were included in this analysis as they are specific to the caregiver (5 European studies). Four generic scales, four specific caregiver QoL scales and 92 functioning tools have been used to assess impact of ASD on Caregiver QoL. The most frequently used QoL scales were: EQ-5D (n=4 studies) and SF-6D/SF-12(n=4/4) as generic tools and FQOL (n=6) and CarerQOL (n=4) as specific tools.The mean caregiver QoL was estimated as EQ-5D = 0.85, SF-6D score of 0.74 and CarerQol-VAS = 7.4. These scores were negatively correlated with child sleep problems and caregivers with <5 hours sleep per night had significantly lower scores. A comparison with the US general population (EQ-5D = 0.89, SF-6D = 0.80) shows lower ASD caregiver scores, particularly in terms of SF-6D.

CONCLUSIONS : A limited number of studies have been conducted in Europe. The SLR established that caregivers of ASD children have decreased QoL when compared to the general population. However, no consensus currently exists on the most appropriate tool to capture caregiver QoL and the large variety of available tools makes comparisons challenging.