An integrated plan within a defined care pathway for the diagnosis, continuative interventions, and periodic redefinition of care of autistic people is essential for better outcomes. Challenges ...include delivering services across all domains or life stages and effective coordination between health/social care providers and services. Further, in the 'real world', service provision varies greatly, and in many settings is significantly weighted towards diagnosis and children's services rather than treatment and support or adult care. This study aims to identify existing care pathways for Autism Spectrum Disorder (ASD) from referral to care management after diagnosis. The study reviewed the international literature in PubMed and PsycInfo databases and collected information on care for autistic individuals from the Autism Spectrum Disorders in Europe (ASDEU) project partners. The study found that published data mainly focused on specific components of care pathways rather than an integrated and coordinated plan of care and legislative indications. They should be aimed at facilitating access to the services for support and the inclusiveness of autistic individuals. Given the need for care addressing the complex and heterogeneous nature of ASD, effective coordination between different health/social care providers and services is essential. It is also suggested that research priority should be given to the identification of an integrated care pathway 'model' centered around case management, individualization, facilitation, support, continuous training and updating, and quality management.
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Limited information exists on autistic service access and costs in Italy.
This study aims to investigate access to educational, healthcare, social, and related services for autistic individuals in ...Italy as part of the Autism Spectrum Disorder in the European Union (ASDEU) project.
Italian carers of autistic individuals completed an online survey regarding services and costs in the 6 months before completion.
Three hundred and three carers of autistic people participated in the survey. The majority of those receiving care were children, males, and lived at home with their parents. Autistic adults were often students (17%) or unemployed but willing to work (17%). Employed carers (49%) worked on average 32.23 ± 9.27 hours per week. A significant portion (82%) took work or school absences to care for autistic individuals, averaging 15.56 ± 14.70 days. On average, carers spent 58.84 ± 48.36 hours per week on caregiving duties. Fifty-five of the autistic individuals received some form of support, 5% utilized residential care, and 6% were hospitalized. Thirty-four percent received outpatient hospital care, and 20% underwent some form of autism-related psychopharmacological therapy. School support was primarily provided by support teachers (18.16 ± 7.02 hours/week). Educational psychologists (80.73%), psychomotor therapists/physiotherapists (53.85%), and speech therapists (50.91%) were frequently paid by carers who paid more per hour. Autistic children received support from educators (73.96 hours/week), group therapy (32.36 hours/week), and speech therapists (31.19 hours/week). Psychologists (76.00%) and counseling/individual therapists (89.13%) were often paid by carers. Carers reported high costs for psychiatrists and psychologists, with frequent use of psychiatric services (8 ± 8 times in 6 months).
Carers' perspectives on the access and costs of services for autistic individuals in Italy can provide insights into areas for improvement in the delivery of autism services.
Research providing an evidence-base for autistic adult services is sparse. The Autism Spectrum Disorders in the European Union (ASDEU) network implemented an on-line survey to determine gaps in ...autistic adult diagnostic evaluation and post-diagnostic support services. More than 55% in all groups experienced most of the recommended features for diagnostic evaluation for autistic adults. In contrast, < 2% of adults or carers, and < 21% of professionals experienced each of the recommended features for post-diagnostic support. In contrast to 61% of professionals, only about 30% of autistic adults and carers had knowledge of good local services models for autism diagnosis in adulthood. There are major differences between good practice guidelines for diagnostic and post-diagnostic care for autistic adults, and what is actually experienced by services users and professionals.
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DOBA, EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, IZUM, KILJ, KISLJ, MFDPS, NLZOH, NUK, ODKLJ, OILJ, PILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UILJ, UKNU, UL, UM, UPUK, VKSCE, VSZLJ, ZAGLJ
Background This nationwide study aimed to estimate Autism Spectrum Disorder (ASD) prevalence in 7-9-year-old Italian children. Promoted by Italy's Ministry of Health and coordinated by the National ...Observatory for Autism at the National Institute of Health, it covered schools in northern (Lecco and Monza-Brianza), central (Rome and its province), and southern (Palermo and its province) regions from February 24, 2016, to February 23, 2018, using a multi-stage approach defined by the European Union's ASD network. Methods Phase one identified ASD-diagnosed children in mainstream schools through local Ministry of Education (MoE) disability registries. Phase two had a subset of schools screen 7-9-year-olds using the Social Communication Questionnaire-Life version (SCQ-L). Those with SCQ-L scores of 15 + underwent clinical consultation for ASD symptoms, cognitive abilities, and life skills. To counter potential false negatives, 20% scoring 11-14 were randomly assessed via Autism Diagnostic Interview-Revised (ADI-R). Results MoE data revealed 9.8 per 1000 certified ASD children in the north, 12.2 in the central, and 10.3 in the south. In phase two, 35,823 SCQ-L questionnaires were distributed across 198 schools (northern: 11,190 in 49 schools, central: 13,628 in 87 schools, southern: 11,005 in 62 schools). Of SCQ-L respondents, 2.4% (n = 390) scored above the 15 cutoff. Among these, 100 had ASD diagnoses, and 50 had other diagnoses. Among 115 families assessed, 16.5% (n = 19) received ASD diagnoses. Conclusions The estimated prevalence of ASD in Italy was 13.4 (11.3-16.0) per 1,000 children aged 7-9 years, with a male-to-female ratio of 4.4:1. It will guide national policies in enhancing services tailored to the specific needs of autistic children. Keywords: Autism spectrum disorder, Epidemiology, Prevalence estimate, Multistage screening
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Individual Health Budget (IHB) is used for social and health integration and to facilitate processes of resource reorientation in healthcare. Despite its increased use in mental health settings, few ...studies investigated its effectiveness in severe mental disorders.
383 IHB beneficiaries were recruited among Mental Health Departments users of the Italian region Friuli Venezia Giulia. Data involved sociodemographic and clinical variables, IHB type and scores of Health of the Nation Outcome Scale (HoNOS) at admission to IHB programme (T0), after 12 months (T1), and after 24 months (T2).
The length and the mean number of hospitalisations and healthcare interventions decreased at T1. A significant scores' reduction from T0 to T1 evaluation was found in HoNOS total score (T-test (P) < 0.05) and in most of its items. An improvement throughout the whole evaluation period (T0 vs. T2) was found in 36% of the IHB beneficiaries, while more than 60% of them remained in the same HoNOS severity category.
Our results support the use of IHB in patients with severe mental problems, since it may contribute to an improvement in social and clinical functioning, consequently lowering the burden on MHDs.
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BFBNIB, NUK, PILJ, SAZU, UL, UM, UPUK
Personal budgets (PBs) may improve the lives of people with mental health conditions and people with intellectual disability (ID). However, a clear definition of PB, benefits, and challenges is still ...faded. This work aims to systematically review evidence on PB use in mental health and ID contexts, from both a qualitative and quantitative perspective, and summarize the recent research on interventions, outcomes, and cost-effectiveness of PBs in beneficiaries with mental health conditions and/or ID. The present systematic review is an update of the existing literature analyzed since 2013. We performed a systematic search strategy of articles using the bibliographic databases PubMed and PsycINFO. Six blinded authors screened the works for inclusion/exclusion criteria, and two blinded authors extracted the data. We performed a formal narrative synthesis of the findings from the selected works. A total of 9,800 publications were screened, and 29 were included. Improvement in responsibility and awareness, quality of life, independent living, paid work, clinical, psychological, and social domains, and everyday aspects of the users’ and their carers’ life have been observed in people with mental health conditions and/or ID. However, the PBs need to be less stressful and burdensome in their management for users, carers, and professionals. In addition, more quantitative research is needed to inform PBs’ policymakers.
Systematic Review Registration
www.crd.york.ac.uk/prospero/
, identifier CRD42020172607.
The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services’ use experiences of autistic adults, carers and professionals with interventions for autistic adults. ...The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.
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DOBA, EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, IZUM, KILJ, KISLJ, MFDPS, NLZOH, NUK, ODKLJ, OILJ, PILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UILJ, UKNU, UL, UM, UPUK, VKSCE, VSZLJ, ZAGLJ
Early identification of Neurodevelopmental Disorders (NDD) allows for faster intervention, which in turn improves clinical outcomes and reduces the individual and societal costs associated with the ...diagnosis. The aims of the study were to 1) investigate the use of the DeepLabCut (DLC) toolbox to automatically analyze the motor patterns of infants at Low Risk (LR) and High Risk (HR) for Autism Spectrum Disorder (ASD); and 2) define the critical time window in which atypical motor patterns discriminate between typically developing infants and those diagnosed with ASD or NDD. The DLC toolbox was used to train a model capable of tracking the movements of both LR and HR infants longitudinally at the ages of 10 days, 6 weeks, 12 weeks, 18 weeks, and 24 weeks. 226 videos of 87 infants (45 females), collected within the Italian Network for Early Detection of Autism Spectrum Disorder (NIDA), were analyzed. Using the Percentage of Correct Key-points (PCKh) accuracy metric, the DLC's tracking performance was verified by comparing the obtained 2D hands and feet coordinates with those extracted by the Movidea software. Furthermore, motor features were computed and fed to three classifiers: Fine Tree, RUSBoosted Trees, and Narrow Neural Network to investigate their usefulness in terms of early NDD prediction. Satisfactory PCKh results were obtained for both hands and feet (left foot: 96.6%, right foot: 96.2 %, left hand: 80.9%, right hand: 82.8%). The best classification results were obtained with the RUSBoosted classifier at the ages of 10 days and 6 weeks. The 5-fold cross-validation accuracy was 81.4%, with a true negative rate of 80.0% and true positive rate 87.5%. Our data confirm the usefulness of DLC as a low-cost approach to track infant movements during the writhing period. Early motor behavior at the ages of 10 days and 6 weeks carries valuable information that has the potential to be suitable in predicting the diagnosis of NDD.
The SARS-CoV-2 pandemic had a negative impact on the mental health of children and adolescents. Eight focus groups and six individual hearings were conducted to gain insights from the perspectives of ...97 Italian professionals from a variety of disciplines, including child and adolescent neuropsychiatrists, pediatricians, general practitioners, social workers, psychologists, teachers, school deans, non-governmental organizations, and a researcher. Urban and rural settings were represented. The present research has been promoted by the Italian Independent Authority for Children and Adolescents (Autorità Garante per l'Infanzia e l'Adolescenza, AGIA) in collaboration with the National Institute of Health (Istituto Superiore di Sanità, ISS) and the Ministry of Education and its scientific value has been supervised by a Scientific Committee. The results of the focus groups' discussions revealed increased vulnerability, with the onset of new mental health disorders in healthy individuals and those in a condition of disadvantage, migratory contexts, and with disabilities. The already critical pre-pandemic structural and operational issues of existing services have been exacerbated. In healthcare, the activation of telemedicine has been a great asset but at the same time has generated challenges and critical issues that are still unresolved. Professionals emphasized the need to pay special attention to planning integrated responses aimed at overcoming inequalities and fragmentation. The result of this initiative translates into a set of operational recommendations useful for guiding investments and policies directed toward the protection of the mental health of minors in the health, educational, and social spheres from the outset.
Atypical motor patterns are potential early markers and predictors of later diagnosis of Autism Spectrum Disorder (ASD). This study aimed to investigate the early motor trajectories of infants at ...high-risk (HR) of ASD through MOVIDEA, a semi-automatic software developed to analyze 2D and 3D videos and provide objective kinematic features of their movements. MOVIDEA was developed within the Italian Network for early detection of Autism Spectrum Disorder (NIDA Network), which is currently coordinating the most extensive surveillance program for infants at risk for neurodevelopmental disorders (NDDs). MOVIDEA was applied to video recordings of 53 low-risk (LR; siblings of typically developing children) and 50 HR infants’ spontaneous movements collected at 10 days and 6, 12, 18, and 24 weeks. Participants were grouped based on their clinical outcome (18 HR received an NDD diagnosis, 32 HR and 53 LR were typically developing). Results revealed that early developmental trajectories of specific motor parameters were different in HR infants later diagnosed with NDDs from those of infants developing typically. Since MOVIDEA was useful in the association of quantitative measures with specific early motor patterns, it should be applied to the early detection of ASD/NDD markers.
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