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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

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 o...

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Autores principales: 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, Riccio, Maria Pia, Saito, Manabu, Schwartz, Ida, Simhal, Anish K., Siracusano, Martina, Sotgiu, Stefano, Stroud, Jacob, Sumiya, Fernando, Tachibana, Yoshiyuki, Takahashi, Nicole, Takahashi, Riina, Tamon, Hiroki, Tancredi, Raffaella, Vitiello, Benedetto, Zuddas, Alessandro, Leventhal, Bennett, Merikangas, Kathleen, Milham, Michael P., Di Martino, Adriana
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9928142/
https://www.ncbi.nlm.nih.gov/pubmed/36788583
http://dx.doi.org/10.1186/s13229-022-00536-z
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author 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
Riccio, Maria Pia
Saito, Manabu
Schwartz, Ida
Simhal, Anish K.
Siracusano, Martina
Sotgiu, Stefano
Stroud, Jacob
Sumiya, Fernando
Tachibana, Yoshiyuki
Takahashi, Nicole
Takahashi, Riina
Tamon, Hiroki
Tancredi, Raffaella
Vitiello, Benedetto
Zuddas, Alessandro
Leventhal, Bennett
Merikangas, Kathleen
Milham, Michael P.
Di Martino, Adriana
author_facet 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
Riccio, Maria Pia
Saito, Manabu
Schwartz, Ida
Simhal, Anish K.
Siracusano, Martina
Sotgiu, Stefano
Stroud, Jacob
Sumiya, Fernando
Tachibana, Yoshiyuki
Takahashi, Nicole
Takahashi, Riina
Tamon, Hiroki
Tancredi, Raffaella
Vitiello, Benedetto
Zuddas, Alessandro
Leventhal, Bennett
Merikangas, Kathleen
Milham, Michael P.
Di Martino, Adriana
author_sort Vibert, Bethany
collection PubMed
description 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13229-022-00536-z.
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spelling pubmed-99281422023-02-15 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 Riccio, Maria Pia Saito, Manabu Schwartz, Ida Simhal, Anish K. Siracusano, Martina Sotgiu, Stefano Stroud, Jacob Sumiya, Fernando Tachibana, Yoshiyuki Takahashi, Nicole Takahashi, Riina Tamon, Hiroki Tancredi, Raffaella Vitiello, Benedetto Zuddas, Alessandro Leventhal, Bennett Merikangas, Kathleen Milham, Michael P. Di Martino, Adriana Mol Autism Research 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13229-022-00536-z. BioMed Central 2023-02-14 /pmc/articles/PMC9928142/ /pubmed/36788583 http://dx.doi.org/10.1186/s13229-022-00536-z Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
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
Riccio, Maria Pia
Saito, Manabu
Schwartz, Ida
Simhal, Anish K.
Siracusano, Martina
Sotgiu, Stefano
Stroud, Jacob
Sumiya, Fernando
Tachibana, Yoshiyuki
Takahashi, Nicole
Takahashi, Riina
Tamon, Hiroki
Tancredi, Raffaella
Vitiello, Benedetto
Zuddas, Alessandro
Leventhal, Bennett
Merikangas, Kathleen
Milham, Michael P.
Di Martino, Adriana
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
title 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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_short 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
title_sort 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
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9928142/
https://www.ncbi.nlm.nih.gov/pubmed/36788583
http://dx.doi.org/10.1186/s13229-022-00536-z
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