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      Do autistic patients change healthcare services utilisation through the transition age? An Italian longitudinal retrospective study

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          Abstract

          Objectives

          This paper aims to provide an estimate of the prevalence rate of autism spectrum disorder (ASD) in 8-year-olds in 2017 based on administrative databases and to investigate the change in healthcare service use during the healthcare transition age of 18.

          Design

          This research is based on a longitudinal retrospective cohort study.

          Setting

          The data is drawn from the Italian Administrative Healthcare Database (2010–2017).

          Participants

          We identified 5607 ASD patients; 331 ASD patients from 2012 to 2015 in the calendar year of their 18th birthday were selected and their health service utilisation during a 5-year period—ranging from 2 years preceding and succeeding their 18th year—were investigated.

          Interventions

          None.

          Primary and secondary outcome measures

          Prevalence, incidence and proportion of ASD patients receiving specific healthcare services were included in the outcome measures.

          Results

          Prevalence of ASD at age 8 was 5.4/1000. Global access to health and social services was lower both before and after age 18 (46.5% at 16; 68.0% at 18; 54.1% at 20). The percentage of patients receiving a neuropsychiatric consultation decreased after age 18 (30.8% at 18; 5.4% at 20). Community mental health services (CMHS) utilisation rate increased above 18 years of age. Regarding psychiatric visits, for both outpatient and CMHS, an increase was observed from 17.8% at age 18 to 25.4% at age 20. The utilisation of rehabilitation services decreased with age, dropping from 17.8% at age 16 to 1.8% at age 20. Psychiatric outpatient services remained stable across ages at about 14%.

          Conclusion

          Our findings suggest that ASD patients changed clinical reference services with age from neuropsychiatric and rehabilitative services towards psychiatric and community-based services as they transitioned from paediatric to adult healthcare services.

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          Most cited references28

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          Autism spectrum disorder

          Autism spectrum disorder is a term used to describe a constellation of early-appearing social communication deficits and repetitive sensory–motor behaviours associated with a strong genetic component as well as other causes. The outlook for many individuals with autism spectrum disorder today is brighter than it was 50 years ago; more people with the condition are able to speak, read, and live in the community rather than in institutions, and some will be largely free from symptoms of the disorder by adulthood. Nevertheless, most individuals will not work full-time or live independently. Genetics and neuroscience have identified intriguing patterns of risk, but without much practical benefit yet. Considerable work is still needed to understand how and when behavioural and medical treatments can be effective, and for which children, including those with substantial comorbidities. It is also important to implement what we already know and develop services for adults with autism spectrum disorder. Clinicians can make a difference by providing timely and individualised help to families navigating referrals and access to community support systems, by providing accurate information despite often unfiltered media input, and by anticipating transitions such as family changes and school entry and leaving.
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            The Changing Epidemiology of Autism Spectrum Disorders

            Autism spectrum disorder (ASD) is a complex neurodevelopmental condition with lifelong impacts. Genetic and environmental factors contribute to ASD etiology, which remains incompletely understood. Research on ASD epidemiology has made significant advances in the past decade. Current prevalence is estimated to be at least 1.5% in developed countries, with recent increases primarily among those without comorbid intellectual disability. Genetic studies have identified a number of rare de novo mutations and gained footing in the areas of polygenic risk, epigenetics, and gene-by-environment interaction. Epidemiologic investigations focused on nongenetic factors have established advanced parental age and preterm birth as ASD risk factors, indicated that prenatal exposure to air pollution and short interpregnancy interval are potential risk factors, and suggested the need for further exploration of certain prenatal nutrients, metabolic conditions, and exposure to endocrine-disrupting chemicals. We discuss future challenges and goals for ASD epidemiology as well as public health implications.
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              Autism from 2 to 9 years of age.

              Autism represents an unusual pattern of development beginning in the infant and toddler years. To examine the stability of autism spectrum diagnoses made at ages 2 through 9 years and identify features that predicted later diagnosis. Prospective study of diagnostic classifications from standardized instruments including a parent interview (Autism Diagnostic Interview-Revised [ADI-R]), an observational scale (Pre-Linguistic Autism Diagnostic Observation Schedule/Autism Diagnostic Observation Schedule [ADOS]), and independent clinical diagnoses made at ages 2 and 9 years compared with a clinical research team's criterion standard diagnoses. Three inception cohorts: consecutive referrals for autism assessment to (1) state-funded community autism centers, (2) a private university autism clinic, and (3) case controls with developmental delay from community clinics. At 2 years of age, 192 autism referrals and 22 developmentally delayed case controls; 172 children seen at 9 years of age. Consensus best-estimate diagnoses at 9 years of age. Percentage agreement between best-estimate diagnoses at 2 and 9 years of age was 67, with a weighted kappa of 0.72. Diagnostic change was primarily accounted for by movement from pervasive developmental disorder not otherwise specified to autism. Each measure at age 2 years was strongly prognostic for autism at age 9 years, with odds ratios of 6.6 for parent interview, 6.8 for observation, and 12.8 for clinical judgment. Once verbal IQ (P = .001) was taken into account at age 2 years, the ADI-R repetitive domain (P = .02) and the ADOS social (P = .05) and repetitive domains (P = .005) significantly predicted autism at age 9 years. Diagnostic stability at age 9 years was very high for autism at age 2 years and less strong for pervasive developmental disorder not otherwise specified. Judgment of experienced clinicians, trained on standard instruments, consistently added to information available from parent interview and standardized observation.
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                Author and article information

                Journal
                BMJ Open
                BMJ Open
                bmjopen
                bmjopen
                BMJ Open
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                2044-6055
                2019
                14 November 2019
                : 9
                : 11
                : e030844
                Affiliations
                [1 ] departmentEpidemiology Unit , Agency for Health Protection of Milan , Milan, Italy
                [2 ] Agency for Health Protection of Milan , Milan, Italy
                Author notes
                [Correspondence to ] Dr Antonio Giampiero Russo; agrusso@ 123456ats-milano.it
                Author information
                http://orcid.org/0000-0002-8576-942X
                http://orcid.org/0000-0002-5681-5861
                Article
                bmjopen-2019-030844
                10.1136/bmjopen-2019-030844
                6886997
                31727653
                603a0371-d435-4b56-9bbd-d3866356f995
                © Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

                This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

                History
                : 03 April 2019
                : 27 September 2019
                : 03 October 2019
                Funding
                Funded by: Roche S.p.A;
                Award ID: Deliberazione N.36 del 16/01/2018
                Categories
                Epidemiology
                Original Research
                1506
                1692
                Custom metadata
                unlocked

                Medicine
                autism spectrum disorder,epidemiology,administrative databases,health outcomes,health service research

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