Assessing the validity of administrative health data for the identification of children and youth with autism spectrum disorder in Ontario / Jennifer D. BROOKS in Autism Research, 14-5 (May 2021)  

Public ISBD [article]  inAutism Research > 14-5 (May 2021) . - p.1037-1045 Titre : Assessing the validity of administrative health data for the identification of children and youth with autism spectrum disorder in Ontario Type de document : Texte imprimé et/ou numérique Auteurs : Jennifer D. BROOKS, Auteur ; Jasleen ARNEJA, Auteur ; Longdi FU, Auteur ; Farah E. SAXENA, Auteur ; Karen TU, Auteur ; Virgiliu Bogdan PINZARU, Auteur ; Evdokia ANAGNOSTOU, Auteur ; Kirk NYLEN, Auteur ; Natasha R. SAUNDERS, Auteur ; Hong LU, Auteur ; John MCLAUGHLIN, Auteur ; Susan E. BRONSKILL, Auteur Article en page(s) : p.1037-1045 Langues : Anglais (eng) Mots-clés : Ontario  administrative health data  algorithm  autism Index. décimale : PER Périodiques Résumé : Population-level identification of children and youth with ASD is essential for surveillance and planning for required services. The objective of this study was to develop and validate an algorithm for the identification of children and youth with ASD using administrative health data. In this retrospective validation study, we linked an electronic medical record (EMR)-based reference standard, consisting 10,000 individuals aged 1-24?years, including 112 confirmed ASD cases to Ontario administrative health data, for the testing of multiple case-finding algorithms. Sensitivity, specificity, positive predictive value (PPV), negative predictive value (NPV), and corresponding 95% confidence intervals (CI) were calculated for each algorithm. The optimal algorithm was validated in three external cohorts representing family practice, education, and specialized clinical settings. The optimal algorithm included an ASD diagnostic code for a single hospital discharge or emergency department visit or outpatient surgery, or three ASD physician billing codes in 3?years. This algorithm's sensitivity was 50.0% (95%CI 40.7-88.7%), specificity 99.6% (99.4-99.7), PPV 56.6% (46.8-66.3), and NPV 99.4% (99.3-99.6). The results of this study illustrate limitations and need for cautious interpretation when using administrative health data alone for the identification of children and youth with ASD. LAY SUMMARY: We tested algorithms (set of rules) to identify young people with ASD using routinely collected administrative health data. Even the best algorithm misses more than half of those in Ontario with ASD. To understand this better, we tested how well the algorithm worked in different settings (family practice, education, and specialized clinics). The identification of individuals with ASD at a population level is essential for planning for support services and the allocation of resources. Autism Res 2021, 14: 1037-1045. © 2021 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals LLC. En ligne : http://dx.doi.org/10.1002/aur.2491 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444 [article] Assessing the validity of administrative health data for the identification of children and youth with autism spectrum disorder in Ontario [Texte imprimé et/ou numérique] / Jennifer D. BROOKS, Auteur ; Jasleen ARNEJA, Auteur ; Longdi FU, Auteur ; Farah E. SAXENA, Auteur ; Karen TU, Auteur ; Virgiliu Bogdan PINZARU, Auteur ; Evdokia ANAGNOSTOU, Auteur ; Kirk NYLEN, Auteur ; Natasha R. SAUNDERS, Auteur ; Hong LU, Auteur ; John MCLAUGHLIN, Auteur ; Susan E. BRONSKILL, Auteur . - p.1037-1045. Langues : Anglais (eng) in Autism Research > 14-5 (May 2021) . - p.1037-1045 Mots-clés : Ontario  administrative health data  algorithm  autism Index. décimale : PER Périodiques Résumé : Population-level identification of children and youth with ASD is essential for surveillance and planning for required services. The objective of this study was to develop and validate an algorithm for the identification of children and youth with ASD using administrative health data. In this retrospective validation study, we linked an electronic medical record (EMR)-based reference standard, consisting 10,000 individuals aged 1-24?years, including 112 confirmed ASD cases to Ontario administrative health data, for the testing of multiple case-finding algorithms. Sensitivity, specificity, positive predictive value (PPV), negative predictive value (NPV), and corresponding 95% confidence intervals (CI) were calculated for each algorithm. The optimal algorithm was validated in three external cohorts representing family practice, education, and specialized clinical settings. The optimal algorithm included an ASD diagnostic code for a single hospital discharge or emergency department visit or outpatient surgery, or three ASD physician billing codes in 3?years. This algorithm's sensitivity was 50.0% (95%CI 40.7-88.7%), specificity 99.6% (99.4-99.7), PPV 56.6% (46.8-66.3), and NPV 99.4% (99.3-99.6). The results of this study illustrate limitations and need for cautious interpretation when using administrative health data alone for the identification of children and youth with ASD. LAY SUMMARY: We tested algorithms (set of rules) to identify young people with ASD using routinely collected administrative health data. Even the best algorithm misses more than half of those in Ontario with ASD. To understand this better, we tested how well the algorithm worked in different settings (family practice, education, and specialized clinics). The identification of individuals with ASD at a population level is essential for planning for support services and the allocation of resources. Autism Res 2021, 14: 1037-1045. © 2021 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals LLC. En ligne : http://dx.doi.org/10.1002/aur.2491 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444

Identifying Children and Youth With Autism Spectrum Disorder in Electronic Medical Records: Examining Health System Utilization and Comorbidities / Jennifer D. BROOKS in Autism Research, 14-2 (February 2021)  

Public ISBD [article]  inAutism Research > 14-2 (February 2021) . - p.400-410 Titre : Identifying Children and Youth With Autism Spectrum Disorder in Electronic Medical Records: Examining Health System Utilization and Comorbidities Type de document : Texte imprimé et/ou numérique Auteurs : Jennifer D. BROOKS, Auteur ; Susan E. BRONSKILL, Auteur ; Longdi FU, Auteur ; Farah E. SAXENA, Auteur ; Jasleen ARNEJA, Auteur ; Virgiliu Bogdan PINZARU, Auteur ; Evdokia ANAGNOSTOU, Auteur ; Kirk NYLEN, Auteur ; John MCLAUGHLIN, Auteur ; Karen TU, Auteur Article en page(s) : p.400-410 Langues : Anglais (eng) Mots-clés : Asd  algorithm  autism  comorbidity  electronic medical record  health system use Index. décimale : PER Périodiques Résumé : Autism spectrum disorder (ASD) is a neurodevelopmental disorder requiring significant health and educational resources for affected individuals. A reference standard for ASD was generated from an existing population-based cohort of 10,000 children and youth aged 1-24?years who were randomly selected for chart abstraction from 29,256 patients from 119 family physicians. We developed and validated an algorithm to identify children and youth with ASD within an electronic medical record system (N = 80,237, aged 1-24?years) in order to examine the prevalence of comorbidities and quantify health system utilization within the cohort. We identified 1,062 children and youth with ASD representing a prevalence of 1.32%. Compared to individuals without ASD, those with ASD had a higher prevalence of asthma, were more likely to visit a specialist, undergo surgery, and be hospitalized for psychiatric reasons. Children and youth with ASD in Ontario have complex health system needs, illustrated through a significant burden of comorbidities and increased health system utilization. LAY SUMMARY: Our paper generates population-based estimates of health system use by children and youth with ASD, who have a higher burden of comorbidities than the general population. We developed a case-finding algorithm and applied it in electronic medical records to create a cohort of children and youth with ASD, thereby generating an important resource to further study the health care needs of individuals with ASD. En ligne : http://dx.doi.org/10.1002/aur.2419 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=441 [article] Identifying Children and Youth With Autism Spectrum Disorder in Electronic Medical Records: Examining Health System Utilization and Comorbidities [Texte imprimé et/ou numérique] / Jennifer D. BROOKS, Auteur ; Susan E. BRONSKILL, Auteur ; Longdi FU, Auteur ; Farah E. SAXENA, Auteur ; Jasleen ARNEJA, Auteur ; Virgiliu Bogdan PINZARU, Auteur ; Evdokia ANAGNOSTOU, Auteur ; Kirk NYLEN, Auteur ; John MCLAUGHLIN, Auteur ; Karen TU, Auteur . - p.400-410. Langues : Anglais (eng) in Autism Research > 14-2 (February 2021) . - p.400-410 Mots-clés : Asd  algorithm  autism  comorbidity  electronic medical record  health system use Index. décimale : PER Périodiques Résumé : Autism spectrum disorder (ASD) is a neurodevelopmental disorder requiring significant health and educational resources for affected individuals. A reference standard for ASD was generated from an existing population-based cohort of 10,000 children and youth aged 1-24?years who were randomly selected for chart abstraction from 29,256 patients from 119 family physicians. We developed and validated an algorithm to identify children and youth with ASD within an electronic medical record system (N = 80,237, aged 1-24?years) in order to examine the prevalence of comorbidities and quantify health system utilization within the cohort. We identified 1,062 children and youth with ASD representing a prevalence of 1.32%. Compared to individuals without ASD, those with ASD had a higher prevalence of asthma, were more likely to visit a specialist, undergo surgery, and be hospitalized for psychiatric reasons. Children and youth with ASD in Ontario have complex health system needs, illustrated through a significant burden of comorbidities and increased health system utilization. LAY SUMMARY: Our paper generates population-based estimates of health system use by children and youth with ASD, who have a higher burden of comorbidities than the general population. We developed a case-finding algorithm and applied it in electronic medical records to create a cohort of children and youth with ASD, thereby generating an important resource to further study the health care needs of individuals with ASD. En ligne : http://dx.doi.org/10.1002/aur.2419 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=441

Linkage of whole genome sequencing and administrative health data in autism: A proof of concept study / Danielle A. BARIBEAU in Autism Research, 16-8 (August 2023)  

Public ISBD [article]  inAutism Research > 16-8 (August 2023) . - p.1600-1608 Titre : Linkage of whole genome sequencing and administrative health data in autism: A proof of concept study Type de document : Texte imprimé et/ou numérique Auteurs : Danielle A. BARIBEAU, Auteur ; Jasleen ARNEJA, Auteur ; Xuesong WANG, Auteur ; Jennifer HOWE, Auteur ; John R. MCLAUGHLIN, Auteur ; Karen TU, Auteur ; Jun GUAN, Auteur ; Alana IABONI, Auteur ; Elizabeth KELLEY, Auteur ; Muhammad AYUB, Auteur ; Robert NICOLSON, Auteur ; Stelios GEORGIADES, Auteur ; Stephen W. SCHERER, Auteur ; Susan E. BRONSKILL, Auteur ; Evdokia ANAGNOSTOU, Auteur ; Jennifer D. BROOKS, Auteur Article en page(s) : p.1600-1608 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract Whether genetic testing in autism can help understand longitudinal health outcomes and health service needs is unclear. The objective of this study was to determine whether carrying an autism-associated rare genetic variant is associated with differences in health system utilization by autistic children and youth. This retrospective cohort study examined 415 autistic children/youth who underwent genome sequencing and data collection through a translational neuroscience program (Province of Ontario Neurodevelopmental Disorders Network). Participant data were linked to provincial health administrative databases to identify historical health service utilization, health care costs, and complex chronic medical conditions during a 3-year period. Health administrative data were compared between participants with and without a rare genetic variant in at least 1 of 74 genes associated with autism. Participants with a rare variant impacting an autism-associated gene (n=83, 20%) were less likely to have received psychiatric care (at least one psychiatrist visit: 19.3% vs. 34.3%, p=0.01; outpatient mental health visit: 66% vs. 77%, p=0.04). Health care costs were similar between groups (median: $5589 vs. $4938, p=0.4) and genetic status was not associated with odds of being a high-cost participant (top 20%) in this cohort. There were no differences in the proportion with complex chronic medical conditions between those with and without an autism-associated genetic variant. Our study highlights the feasibility and potential value of genomic and health system data linkage to understand health service needs, disparities, and health trajectories in individuals with neurodevelopmental conditions. En ligne : https://doi.org/10.1002/aur.2999 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=510 [article] Linkage of whole genome sequencing and administrative health data in autism: A proof of concept study [Texte imprimé et/ou numérique] / Danielle A. BARIBEAU, Auteur ; Jasleen ARNEJA, Auteur ; Xuesong WANG, Auteur ; Jennifer HOWE, Auteur ; John R. MCLAUGHLIN, Auteur ; Karen TU, Auteur ; Jun GUAN, Auteur ; Alana IABONI, Auteur ; Elizabeth KELLEY, Auteur ; Muhammad AYUB, Auteur ; Robert NICOLSON, Auteur ; Stelios GEORGIADES, Auteur ; Stephen W. SCHERER, Auteur ; Susan E. BRONSKILL, Auteur ; Evdokia ANAGNOSTOU, Auteur ; Jennifer D. BROOKS, Auteur . - p.1600-1608. Langues : Anglais (eng) in Autism Research > 16-8 (August 2023) . - p.1600-1608 Index. décimale : PER Périodiques Résumé : Abstract Whether genetic testing in autism can help understand longitudinal health outcomes and health service needs is unclear. The objective of this study was to determine whether carrying an autism-associated rare genetic variant is associated with differences in health system utilization by autistic children and youth. This retrospective cohort study examined 415 autistic children/youth who underwent genome sequencing and data collection through a translational neuroscience program (Province of Ontario Neurodevelopmental Disorders Network). Participant data were linked to provincial health administrative databases to identify historical health service utilization, health care costs, and complex chronic medical conditions during a 3-year period. Health administrative data were compared between participants with and without a rare genetic variant in at least 1 of 74 genes associated with autism. Participants with a rare variant impacting an autism-associated gene (n=83, 20%) were less likely to have received psychiatric care (at least one psychiatrist visit: 19.3% vs. 34.3%, p=0.01; outpatient mental health visit: 66% vs. 77%, p=0.04). Health care costs were similar between groups (median: $5589 vs. $4938, p=0.4) and genetic status was not associated with odds of being a high-cost participant (top 20%) in this cohort. There were no differences in the proportion with complex chronic medical conditions between those with and without an autism-associated genetic variant. Our study highlights the feasibility and potential value of genomic and health system data linkage to understand health service needs, disparities, and health trajectories in individuals with neurodevelopmental conditions. En ligne : https://doi.org/10.1002/aur.2999 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=510

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