What Is Important for Quality of Life in Adolescents and Adults with ASD? Results from a Nation-Wide Danish Follow-up Study.

Background:  It is becoming increasingly common to measure Quality of life (QoL) among people with autism spectrum disorders (ASD). Most often, this is undertaken by using proxy reporting but letting people with ASD self-report on their QoL is possible and in some researchers’ opinion the most correct method to apply. Furthermore, it is important to explore the factors of importance for having a higher level of QoL. However, usually only a few factors are included within a study, which makes it difficult to conduct a profound analysis of, what is important for QoL. Additionally, the ASD populations studied are often characterized by few females within each sample and a large age-span, including diversity in age at diagnosis. 

Objectives: To investigate a range of diverse factors characterized as primarily within-person or between-person factors and their possible associations to different levels of QoL in a large population of adolescents and adults with ASD between 16 and 26 years.

Methods:  In this nation-wide, follow-up study, 5642 adolescents and adults born in the period 1990-1999 and diagnosed with ASD before turning 14 years were invited to participate in an online survey together with their parents. The adolescents and adults with ASD were identified in the Danish Psychiatric Central Registry. Besides obtaining information about QoL, this survey includes scales and questions composing variables that can be characterized as primarily within-person factors; adaptive functioning, autistic symptomatology, psychiatric comorbidity and maladaptive functioning, and variables that can be characterized as primarily between-person factors; parent empowerment, type(s) of daytime occupation, and received support and intervention. QoL was measured applying three different scales to the ASD study population: The INICO-FEAPS Scale, Personal Wellbeing Index and a single-item visual analogue scale. Using regression models, the data analysis will examine these factors’ contribution to different self-reported QoL levels in the study population. Furthermore, possible pathways between the factors will be explored.

Results: A total of 1731 parents corresponding to a response rate of 30,7% and 931 adolescents and adults with ASD corresponding to a response rate of 16,5% returned the questionnaire in the survey. This study is based on a subsample of the total sample (N=702). Mean age for the ASD population is 20,6 years (SD=2,77) with a male:female ratio of 1:0.25. The following ICD-10 diagnoses are represented (percentage of total sample): Infantile autism (28%), atypical autism (11%), Asperger’s syndrome (43%) and pervasive developmental disorder, not otherwise specified (13%). For 5% of the sample it was not possible to classify the ASD diagnosis according to ICD-10. In the further analyses, factors contributing to different levels of QoL will be highlighted. 

Conclusions: This nation-wide study which is among the largest performed to date will provide knowledge about factors associated with self-reported QoL among adolescents and adults with ASD including both within-person and between-person factors in the analysis to broaden the comprehension of how to understand and improve QoL in this population.