Pilot study to identify key variables able to monitor Autism Spectrum disorders (ASD) care pathways and potential determinants of inequalities

Project Title: Pilot study to identify key variables able to monitor Autism Spectrum disorders (ASD) care pathways and potential determinants of inequalities

Duration of the project: 2016-2019


Main Topic

Based on national and international estimate of prevalence (Elsabbagh et al. 2012; Narzisi et al. 2018), there are about 600,000 people with Autism Spectrum Disorders (ASD) in Italy, including about 100,000 under the age of 18 years. Direct and indirect (e.g., individual and parental productivity loss), as well as lifetime social economic costs, have been associated with ASD (Buescher et al. 2014). Families of children with autism face higher levels of distress than those of children with other disabilities: psychological disorders are common in the caregivers and appear to be marked with high levels of stress, anxiety, and depression (Lai et al. 2015; Picardi et al. 2018; Stewart et al. 2017). Parents also suffer a strong impact in term of time burden, divorce, and loneliness (Chan et al. 2018; Fernandez-Alcantara et al. 2016). In Italy, the institutional agreement among the Ministry of Health and the regions (hereinafter referred to as the Italian ASD Action Plan, IAAP; Conferenza Unificata 2012, 2018), as well as the Italian law on ASD (Law n. 134/2015), identifies strategic priorities for ASD health care, with the final aim of promoting harmonized protocols for ASD diagnosis and evidence-based intervention approaches, according to recommendations defined at national and international level (SIGN 2016; NICE 2013; SNLG 2011; NICE 2011).



The current study aims to implement a core of key variables able to monitor the compliance of care pathways of children/adolescents with ASD diagnosis with Italian essential level of care (LEA) and international evidence based (EB) recommendations. Data collected in the project will also contribute to describe a subpopulation of children/adolescents with ASD based on both clinical and socio-demographic variables.


Type of study

We established a community of practice (CoP) of six professionals (Child psychiatrist and psychologist) that shared a documented clinic expertise in ASD and work in Italian public Child and Adolescent mental Health (CAMH) units of different regions (ASST Brescia, ASL Modena, USL Umbria 1 (Perugia), ASL Viterbo, ASP Catania, ASSL Sassari). The aim of the CoP was to select the set of key variables (Record) according to Italian LEA and EB recommendations. The Record includes some socio-economic and demographic traits of the child/adolescent variables and his/her parents. Then, to test the Record we used data extracted from the clinical cards of children/adolescents with ASD diagnosis, that were in charge of the CAMH units involved in the study during the year 2016 . For each CAMH unit, we randomly selected 120 children/adolescents belonging to the three ranges of age: 2-5; 8-12; 15-18 yrs (40 for each).


Expected results

The analysis of the Records should verify: i) the variables suitability to monitor the individual care pathway; ii) the compliance of the individual care pathway with the pathway established by Italian LEA, across regions and per calendar year; iii) the effects of differences in regional policies on Record suitability and compliance.

Clinical and socio-demographic data collected will allow doing inferences on specific social determinants affecting the individual care pathways as well as to enlighten specific diagnostic and care needs of children/adolescents with ASD.


Responsible of the project: Aldina Venerosi (aldina.venerosi@iss.it)

Department/Center: Centro di riferimento per le Scienze comportamentali e la Salute mentale (SCIC)