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CRISIS AFAR: an international collaborative study of the impact of the COVID-19 pandemic on mental health and service access in youth with autism and neurodevelopmental conditions.
Vibert, Bethany; Segura, Patricia; Gallagher, Louise; Georgiades, Stelios; Pervanidou, Panagiota; Thurm, Audrey; Alexander, Lindsay; Anagnostou, Evdokia; Aoki, Yuta; Birken, Catherine S; Bishop, Somer L; Boi, Jessica; Bravaccio, Carmela; Brentani, Helena; Canevini, Paola; Carta, Alessandra; Charach, Alice; Costantino, Antonella; Cost, Katherine T; Cravo, Elaine A; Crosbie, Jennifer; Davico, Chiara; Donno, Federica; Fujino, Junya; Gabellone, Alessandra; Geyer, Cristiane T; Hirota, Tomoya; Kanne, Stephen; Kawashima, Makiko; Kelley, Elizabeth; Kim, Hosanna; Kim, Young Shin; Kim, So Hyun; Korczak, Daphne J; Lai, Meng-Chuan; Margari, Lucia; Marzulli, Lucia; Masi, Gabriele; Mazzone, Luigi; McGrath, Jane; Monga, Suneeta; Morosini, Paola; Nakajima, Shinichiro; Narzisi, Antonio; Nicolson, Rob; Nikolaidis, Aki; Noda, Yoshihiro; Nowell, Kerri; Polizzi, Miriam; Portolese, Joana.
  • Vibert B; Autism Center, Child Mind Institute, 101 E 56Th Street, Third Floor, New York, NY, USA.
  • Segura P; Autism Center, Child Mind Institute, 101 E 56Th Street, Third Floor, New York, NY, USA.
  • Gallagher L; Department of Psychiatry, School of Medicine, Trinity College Dublin, Dublin, Ireland.
  • Georgiades S; Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, ON, Canada.
  • Pervanidou P; Unit of Developmental and Behavioral Pediatrics, First Department of Pediatrics, School of Medicine, National & Kapodistrian University of Athens, "Aghia Sophia" Children's Hospital, Athens, Greece.
  • Thurm A; Neurodevelopmental and Behavioral Phenotyping Service, National Institute of Mental Health, Bethesda, MD, USA.
  • Alexander L; Center for the Developing Brain, Child Mind Institute, New York, NY, USA.
  • Anagnostou E; Autism Research Centre, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
  • Aoki Y; Department of Paediatrics, University of Toronto, Toronto, ON, Canada.
  • Birken CS; Medical Institute of Developmental Disabilities Research, Showa University, Tokyo, Japan.
  • Bishop SL; Department of Pediatrics, School of Medicine, University of Toronto, Toronto, ON, Canada.
  • Boi J; Division of Paediatric Medicine, Hospital for Sick Children, Toronto, ON, Canada.
  • Bravaccio C; Department of Psychiatry and Behavioral Sciences and Weill Institute for Neurosciences, University of California, San Francisco, CA, USA.
  • Brentani H; Department of Biomedical Sciences, Section of Neuroscience & Clinical Pharmacology, University of Cagliari, Cagliari, Italy.
  • Canevini P; UOSD di Neuropsichiatria Infantile - Dipartimento di Scienze Mediche Traslazionali, Università Federico II di Napoli, Naples, Italy.
  • Carta A; Department of Psychiatry, Hospital das Clinicas HCFMUSP, Faculty of Medicine, University of São Paulo (USP), São Paulo, Brazil.
  • Charach A; Department of Health Sciences, Università Degli Studi Di Milano, Milan, Italy.
  • Costantino A; Epilepsy Center - Sleep Medicine Center, Childhood and Adolescence Neuropsychiatry Unit, ASST SS. Paolo E Carlo, San Paolo Hospital, Milan, Italy.
  • Cost KT; Department of Medical, Surgical and Pharmacy, Unit of Child Neuropsychiatry, University Hospital of Sassari, Sassari, Italy.
  • Cravo EA; Department of Psychiatry, Hospital for Sick Children, Peter Gilgan Centre for Research and Learning, Toronto, ON, Canada.
  • Crosbie J; Department of Psychiatry, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
  • Davico C; Child and Adolescent Neuropsychiatric Unit, Foundation IRCCS Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy.
  • Donno F; Department of Psychiatry, Hospital for Sick Children, Peter Gilgan Centre for Research and Learning, Toronto, ON, Canada.
  • Fujino J; UFPR - Federal University of Paraná, Paraná, Brazil.
  • Gabellone A; Department of Psychiatry, Hospital for Sick Children, Peter Gilgan Centre for Research and Learning, Toronto, ON, Canada.
  • Geyer CT; Department of Psychiatry, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
  • Hirota T; Department of Public Health and Pediatric Sciences, Section of Child and Adolescent Neuropsychiatry, University of Turin, Turin, Italy.
  • Kanne S; Department of Biomedical Sciences, Section of Neuroscience & Clinical Pharmacology, University of Cagliari, Cagliari, Italy.
  • Kawashima M; Department of Psychiatry and Behavioral Sciences, Graduate School of Medical and Dental Sciences, Tokyo Medical and Dental University, Tokyo, Japan.
  • Kelley E; Department of Precision and Regenerative Medicine and Ionian Area, (DiMePRe-J), University of Bari "Aldo Moro", Bari, Italy.
  • Kim H; UFPR - Federal University of Paraná, Paraná, Brazil.
  • Kim YS; Department of Psychiatry and Behavioral Sciences, University of California San Francisco, San Francisco, CA, USA.
  • Kim SH; Department of Neuropsychiatry, Graduate School of Medicine, Hirosaki University, Hirosaki, Aomori, Japan.
  • Korczak DJ; Department of Psychiatry, Weill Cornell Medical College, Center for Autism and the Developing Brain, New York, NY, USA.
  • Lai MC; Koishikawa Tokyo Hospital, Tokyo, Japan.
  • Margari L; Department of Psychology, Queens University, Kingston, ON, Canada.
  • Marzulli L; The UCSF Center for ASD & NDDs, University of California San Francisco, San Francisco, CA, USA.
  • Masi G; The UCSF Center for ASD & NDDs, University of California San Francisco, San Francisco, CA, USA.
  • Mazzone L; School of Psychology and Psychiatry, Korea University, Seoul, South Korea.
  • McGrath J; Department of Psychiatry, Hospital for Sick Children, Peter Gilgan Centre for Research and Learning, Toronto, ON, Canada.
  • Monga S; Department of Psychiatry, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
  • Morosini P; Department of Psychiatry, Hospital for Sick Children, Peter Gilgan Centre for Research and Learning, Toronto, ON, Canada.
  • Nakajima S; Department of Psychiatry, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
  • Narzisi A; Autism Research Centre, Department of Psychiatry, University of Cambridge, Cambridge, UK.
  • Nicolson R; Centre for Addiction and Mental Health, Toronto, ON, Canada.
  • Nikolaidis A; Department of Psychiatry, National Taiwan University Hospital and College of Medicine, Taipei, Taiwan.
  • Noda Y; Department of Precision and Regenerative Medicine and Ionian Area, (DiMePRe-J), University of Bari "Aldo Moro", Bari, Italy.
  • Nowell K; Department of Precision and Regenerative Medicine and Ionian Area, (DiMePRe-J), University of Bari "Aldo Moro", Bari, Italy.
  • Polizzi M; IRCCS Stella Maris Foundation, Calambrone-Pisa, Italy.
  • Portolese J; Child Neurology and Psychiatry Unit, Systems Medicine Department, University of Rome Tor Vergata, Rome, Italy.
Mol Autism ; 14(1): 7, 2023 02 14.
Article in English | MEDLINE | ID: covidwho-2246058
ABSTRACT

BACKGROUND:

Heterogeneous mental health outcomes during the COVID-19 pandemic are documented in the general population. Such heterogeneity has not been systematically assessed in youth with autism spectrum disorder (ASD) and related neurodevelopmental disorders (NDD). To identify distinct patterns of the pandemic impact and their predictors in ASD/NDD youth, we focused on pandemic-related changes in symptoms and access to services.

METHODS:

Using a naturalistic observational design, we assessed parent responses on the Coronavirus Health and Impact Survey Initiative (CRISIS) Adapted For Autism and Related neurodevelopmental conditions (AFAR). Cross-sectional AFAR data were aggregated across 14 European and North American sites yielding a clinically well-characterized sample of N = 1275 individuals with ASD/NDD (age = 11.0 ± 3.6 years; n females = 277). To identify subgroups with differential outcomes, we applied hierarchical clustering across eleven variables measuring changes in symptoms and access to services. Then, random forest classification assessed the importance of socio-demographics, pre-pandemic service rates, clinical severity of ASD-associated symptoms, and COVID-19 pandemic experiences/environments in predicting the outcome subgroups.

RESULTS:

Clustering revealed four subgroups. One subgroup-broad symptom worsening only (20%)-included youth with worsening across a range of symptoms but with service disruptions similar to the average of the aggregate sample. The other three subgroups were, relatively, clinically stable but differed in service access primarily modified services (23%), primarily lost services (6%), and average services/symptom changes (53%). Distinct combinations of a set of pre-pandemic services, pandemic environment (e.g., COVID-19 new cases, restrictions), experiences (e.g., COVID-19 Worries), and age predicted each outcome subgroup.

LIMITATIONS:

Notable limitations of the study are its cross-sectional nature and focus on the first six months of the pandemic.

CONCLUSIONS:

Concomitantly assessing variation in changes of symptoms and service access during the first phase of the pandemic revealed differential outcome profiles in ASD/NDD youth. Subgroups were characterized by distinct prediction patterns across a set of pre- and pandemic-related experiences/contexts. Results may inform recovery efforts and preparedness in future crises; they also underscore the critical value of international data-sharing and collaborations to address the needs of those most vulnerable in times of crisis.
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Full text: Available Collection: International databases Database: MEDLINE Main subject: Autistic Disorder / Autism Spectrum Disorder / COVID-19 Type of study: Experimental Studies / Observational study / Prognostic study / Qualitative research / Randomized controlled trials Limits: Adolescent / Child / Female / Humans Language: English Journal: Mol Autism Year: 2023 Document Type: Article Affiliation country: S13229-022-00536-z

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Full text: Available Collection: International databases Database: MEDLINE Main subject: Autistic Disorder / Autism Spectrum Disorder / COVID-19 Type of study: Experimental Studies / Observational study / Prognostic study / Qualitative research / Randomized controlled trials Limits: Adolescent / Child / Female / Humans Language: English Journal: Mol Autism Year: 2023 Document Type: Article Affiliation country: S13229-022-00536-z