ECHO autism adult healthcare: Training community clinicians to provide quality care for autistic adults / Beth A. MALOW in Autism Research, 16-8 (August 2023)  

Public ISBD [article]  inAutism Research > 16-8 (August 2023) . - p.1619-1629 Titre : ECHO autism adult healthcare: Training community clinicians to provide quality care for autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Beth A. MALOW, Auteur ; Micah MAZUREK, Auteur ; Gary STOBBE, Auteur ; Mavara M. AGRAWAL, Auteur ; Rachel LOFTIN, Auteur ; David CAUDEL, Auteur ; Amy HESS, Auteur ; Alexander WESTPHAL, Auteur ; Joshua SMITH, Auteur ; Janet SHOUSE, Auteur ; Nancy CHEAK-ZAMORA, Auteur ; Kristin SOHL, Auteur Article en page(s) : p.1619-1629 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract Autistic adults experience significant unmet healthcare needs, with opportunities for improvement in both the systems and the practitioners who serve this population. Primary care physicians/practitioners (PCPs) are a natural choice to provide comprehensive care to autistic adults but often lack experience in serving this population. This pilot study developed and tested an Extension for Community Healthcare Outcomes (ECHO) Autism model adapted from our previous work, focused specifically on training PCPs in best-practice care for autistic adults. The project was informed directly by the perspectives and preferences of autistic adults, caregivers, and PCPs. Two consecutive cohorts of PCPs participated in ECHO Autism Adult Healthcare sessions. Each cohort met 1?h twice a month for 6?months, with 37 PCPs (n=20 in Cohort 1, and n=17 in Cohort 2) participating. Based on findings from the first cohort, adjustments were made to refine the session preparation, curriculum, conduct of the ECHO, resources, and evaluation. After participation in the ECHO Autism program, PCP self-efficacy and satisfaction improved, while the number of perceived barriers did not change. Knowledge did not improve significantly in Cohort 1, but after adjustments to the training model, participants in Cohort 2 showed significant knowledge gains. While attention to systems of care is critical to addressing barriers in healthcare in the autistic population, the ECHO Autism Adult Healthcare model is feasible and holds promise for improving PCP satisfaction and self-efficacy in working with autistic adults. En ligne : https://doi.org/10.1002/aur.2996 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=510 [article] ECHO autism adult healthcare: Training community clinicians to provide quality care for autistic adults [Texte imprimé et/ou numérique] / Beth A. MALOW, Auteur ; Micah MAZUREK, Auteur ; Gary STOBBE, Auteur ; Mavara M. AGRAWAL, Auteur ; Rachel LOFTIN, Auteur ; David CAUDEL, Auteur ; Amy HESS, Auteur ; Alexander WESTPHAL, Auteur ; Joshua SMITH, Auteur ; Janet SHOUSE, Auteur ; Nancy CHEAK-ZAMORA, Auteur ; Kristin SOHL, Auteur . - p.1619-1629. Langues : Anglais (eng) in Autism Research > 16-8 (August 2023) . - p.1619-1629 Index. décimale : PER Périodiques Résumé : Abstract Autistic adults experience significant unmet healthcare needs, with opportunities for improvement in both the systems and the practitioners who serve this population. Primary care physicians/practitioners (PCPs) are a natural choice to provide comprehensive care to autistic adults but often lack experience in serving this population. This pilot study developed and tested an Extension for Community Healthcare Outcomes (ECHO) Autism model adapted from our previous work, focused specifically on training PCPs in best-practice care for autistic adults. The project was informed directly by the perspectives and preferences of autistic adults, caregivers, and PCPs. Two consecutive cohorts of PCPs participated in ECHO Autism Adult Healthcare sessions. Each cohort met 1?h twice a month for 6?months, with 37 PCPs (n=20 in Cohort 1, and n=17 in Cohort 2) participating. Based on findings from the first cohort, adjustments were made to refine the session preparation, curriculum, conduct of the ECHO, resources, and evaluation. After participation in the ECHO Autism program, PCP self-efficacy and satisfaction improved, while the number of perceived barriers did not change. Knowledge did not improve significantly in Cohort 1, but after adjustments to the training model, participants in Cohort 2 showed significant knowledge gains. While attention to systems of care is critical to addressing barriers in healthcare in the autistic population, the ECHO Autism Adult Healthcare model is feasible and holds promise for improving PCP satisfaction and self-efficacy in working with autistic adults. En ligne : https://doi.org/10.1002/aur.2996 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=510

ECHO Autism Transition: Enhancing healthcare for adolescents and young adults with autism spectrum disorder / Micah O MAZUREK in Autism, 24-3 (April 2020)  

Public ISBD [article]  inAutism > 24-3 (April 2020) . - p.633-644 Titre : ECHO Autism Transition: Enhancing healthcare for adolescents and young adults with autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Micah O MAZUREK, Auteur ; Gary STOBBE, Auteur ; Rachel LOFTIN, Auteur ; Beth A. MALOW, Auteur ; Mavara M. AGRAWAL, Auteur ; Mark TAPIA, Auteur ; Amy HESS, Auteur ; Justin FARMER, Auteur ; Nancy C. CHEAK-ZAMORA, Auteur ; Karen A. KUHLTHAU, Auteur ; Kristin SOHL, Auteur Article en page(s) : p.633-644 Langues : Anglais (eng) Mots-clés : adolescents  adults  autism spectrum disorders  health services  medical comorbidity  psychiatric comorbidity Index. décimale : PER Périodiques Résumé : Transition-age youth and young adults with autism spectrum disorder have complex healthcare needs, yet the current healthcare system is not equipped to adequately meet the needs of this growing population. Primary care providers lack training and confidence in caring for youth and young adults with autism spectrum disorder. The current study developed and tested an adaptation of the Extension for Community Healthcare Outcomes model to train and mentor primary care providers (n = 16) in best-practice care for transition-age youth and young adults with autism spectrum disorder. The Extension for Community Healthcare Outcomes Autism Transition program consisted of 12 weekly 1-h sessions connecting primary care providers to an interdisciplinary expert team via multipoint videoconferencing. Sessions included brief didactics, case-based learning, and guided practice. Measures of primary care provider self-efficacy, knowledge, and practice were administered pre- and post-training. Participants demonstrated significant improvements in self-efficacy regarding caring for youth/young adults with autism spectrum disorder and reported high satisfaction and changes in practice as a result of participation. By contrast, no significant improvements in knowledge or perceived barriers were observed. Overall, the results indicate that the model holds promise for improving primary care providers' confidence and interest in working with transition-age youth and young adults with autism spectrum disorder. However, further refinements may be helpful for enhancing scope and impact on practice. En ligne : http://dx.doi.org/10.1177/1362361319879616 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=422 [article] ECHO Autism Transition: Enhancing healthcare for adolescents and young adults with autism spectrum disorder [Texte imprimé et/ou numérique] / Micah O MAZUREK, Auteur ; Gary STOBBE, Auteur ; Rachel LOFTIN, Auteur ; Beth A. MALOW, Auteur ; Mavara M. AGRAWAL, Auteur ; Mark TAPIA, Auteur ; Amy HESS, Auteur ; Justin FARMER, Auteur ; Nancy C. CHEAK-ZAMORA, Auteur ; Karen A. KUHLTHAU, Auteur ; Kristin SOHL, Auteur . - p.633-644. Langues : Anglais (eng) in Autism > 24-3 (April 2020) . - p.633-644 Mots-clés : adolescents  adults  autism spectrum disorders  health services  medical comorbidity  psychiatric comorbidity Index. décimale : PER Périodiques Résumé : Transition-age youth and young adults with autism spectrum disorder have complex healthcare needs, yet the current healthcare system is not equipped to adequately meet the needs of this growing population. Primary care providers lack training and confidence in caring for youth and young adults with autism spectrum disorder. The current study developed and tested an adaptation of the Extension for Community Healthcare Outcomes model to train and mentor primary care providers (n = 16) in best-practice care for transition-age youth and young adults with autism spectrum disorder. The Extension for Community Healthcare Outcomes Autism Transition program consisted of 12 weekly 1-h sessions connecting primary care providers to an interdisciplinary expert team via multipoint videoconferencing. Sessions included brief didactics, case-based learning, and guided practice. Measures of primary care provider self-efficacy, knowledge, and practice were administered pre- and post-training. Participants demonstrated significant improvements in self-efficacy regarding caring for youth/young adults with autism spectrum disorder and reported high satisfaction and changes in practice as a result of participation. By contrast, no significant improvements in knowledge or perceived barriers were observed. Overall, the results indicate that the model holds promise for improving primary care providers' confidence and interest in working with transition-age youth and young adults with autism spectrum disorder. However, further refinements may be helpful for enhancing scope and impact on practice. En ligne : http://dx.doi.org/10.1177/1362361319879616 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=422

Psychophysiological Associations with Gastrointestinal Symptomatology in Autism Spectrum Disorder / Bradley J. FERGUSON in Autism Research, 10-2 (February 2017)  

Public ISBD [article]  inAutism Research > 10-2 (February 2017) . - p.276-288 Titre : Psychophysiological Associations with Gastrointestinal Symptomatology in Autism Spectrum Disorder Type de document : Texte imprimé et/ou numérique Auteurs : Bradley J. FERGUSON, Auteur ; Sarah MARLER, Auteur ; Lily L. ALTSTEIN, Auteur ; Evon BATEY LEE, Auteur ; Jill AKERS, Auteur ; Kristin SOHL, Auteur ; Aaron MCLAUGHLIN, Auteur ; Kaitlyn HARTNETT, Auteur ; Briana KILLE, Auteur ; Micah MAZUREK, Auteur ; Eric A. MACKLIN, Auteur ; Erin MCDONNELL, Auteur ; Mariah BARSTOW, Auteur ; Margaret L. BAUMAN, Auteur ; Kara Gross MARGOLIS, Auteur ; Jeremy VEENSTRA-VANDERWEELE, Auteur ; David Q. BEVERSDORF, Auteur Article en page(s) : p.276-288 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  gastrointestinal  autonomic nervous system  sympathetic  parasympathetic  anxiety  constipation Index. décimale : PER Périodiques Résumé : Autism spectrum disorder (ASD) is often accompanied by gastrointestinal disturbances, which also may impact behavior. Alterations in autonomic nervous system functioning are also frequently observed in ASD. The relationship between these findings in ASD is not known. We examined the relationship between gastrointestinal symptomatology, examining upper and lower gastrointestinal tract symptomatology separately, and autonomic nervous system functioning, as assessed by heart rate variability and skin conductance level, in a sample of 120 individuals with ASD. Relationships with co-occurring medical and psychiatric symptoms were also examined. While the number of participants with significant upper gastrointestinal tract problems was small in this sample, 42.5% of participants met criteria for functional constipation, a disorder of the lower gastrointestinal tract. Heart rate variability, a measure of parasympathetic modulation of cardiac activity, was found to be positively associated with lower gastrointestinal tract symptomatology at baseline. This relationship was particularly strong for participants with co-occurring diagnoses of anxiety disorder and for those with a history of regressive ASD or loss of previously acquired skills. These findings suggest that autonomic function and gastrointestinal problems are intertwined in children with ASD; although it is not possible to assess causality in this data set. Future work should examine the impact of treatment of gastrointestinal problems on autonomic function and anxiety, as well as the impact of anxiety treatment on gastrointestinal problems. Clinicians should be aware that gastrointestinal problems, anxiety, and autonomic dysfunction may cluster in children with ASD and should be addressed in a multidisciplinary treatment plan. En ligne : http://dx.doi.org/10.1002/aur.1646 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=303 [article] Psychophysiological Associations with Gastrointestinal Symptomatology in Autism Spectrum Disorder [Texte imprimé et/ou numérique] / Bradley J. FERGUSON, Auteur ; Sarah MARLER, Auteur ; Lily L. ALTSTEIN, Auteur ; Evon BATEY LEE, Auteur ; Jill AKERS, Auteur ; Kristin SOHL, Auteur ; Aaron MCLAUGHLIN, Auteur ; Kaitlyn HARTNETT, Auteur ; Briana KILLE, Auteur ; Micah MAZUREK, Auteur ; Eric A. MACKLIN, Auteur ; Erin MCDONNELL, Auteur ; Mariah BARSTOW, Auteur ; Margaret L. BAUMAN, Auteur ; Kara Gross MARGOLIS, Auteur ; Jeremy VEENSTRA-VANDERWEELE, Auteur ; David Q. BEVERSDORF, Auteur . - p.276-288. Langues : Anglais (eng) in Autism Research > 10-2 (February 2017) . - p.276-288 Mots-clés : autism spectrum disorder  gastrointestinal  autonomic nervous system  sympathetic  parasympathetic  anxiety  constipation Index. décimale : PER Périodiques Résumé : Autism spectrum disorder (ASD) is often accompanied by gastrointestinal disturbances, which also may impact behavior. Alterations in autonomic nervous system functioning are also frequently observed in ASD. The relationship between these findings in ASD is not known. We examined the relationship between gastrointestinal symptomatology, examining upper and lower gastrointestinal tract symptomatology separately, and autonomic nervous system functioning, as assessed by heart rate variability and skin conductance level, in a sample of 120 individuals with ASD. Relationships with co-occurring medical and psychiatric symptoms were also examined. While the number of participants with significant upper gastrointestinal tract problems was small in this sample, 42.5% of participants met criteria for functional constipation, a disorder of the lower gastrointestinal tract. Heart rate variability, a measure of parasympathetic modulation of cardiac activity, was found to be positively associated with lower gastrointestinal tract symptomatology at baseline. This relationship was particularly strong for participants with co-occurring diagnoses of anxiety disorder and for those with a history of regressive ASD or loss of previously acquired skills. These findings suggest that autonomic function and gastrointestinal problems are intertwined in children with ASD; although it is not possible to assess causality in this data set. Future work should examine the impact of treatment of gastrointestinal problems on autonomic function and anxiety, as well as the impact of anxiety treatment on gastrointestinal problems. Clinicians should be aware that gastrointestinal problems, anxiety, and autonomic dysfunction may cluster in children with ASD and should be addressed in a multidisciplinary treatment plan. En ligne : http://dx.doi.org/10.1002/aur.1646 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=303

Sleep and Behavioral Problems in Children with Autism Spectrum Disorder / Micah O. MAZUREK in Journal of Autism and Developmental Disorders, 46-6 (June 2016)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 46-6 (June 2016) . - p.1906-1915 Titre : Sleep and Behavioral Problems in Children with Autism Spectrum Disorder Type de document : Texte imprimé et/ou numérique Auteurs : Micah O. MAZUREK, Auteur ; Kristin SOHL, Auteur Article en page(s) : p.1906-1915 Langues : Anglais (eng) Mots-clés : Autism  Autism spectrum disorder  Sleep  Aggression  Hyperactivity  Inattention  Behavior problems Index. décimale : PER Périodiques Résumé : Children with autism spectrum disorder (ASD) are at high risk for sleep disturbance and behavioral dysregulation. However, the relationships between these difficulties are not fully understood. The current study examined the relationships between specific types of sleep and behavioral problems among 81 children with ASD. Sleep problems were significantly associated with physical aggression, irritability, inattention, and hyperactivity. In multivariate analyses, distinct sets of sleep problems accounted for between 22 and 32 % of the variance in behavior problems across models. These results indicate that sleep disturbance is associated with behavioral dysregulation among children with ASD. Of note, night awakenings had the most consistently strong association with daytime behavior problems, even after controlling for the effects of age and sex. En ligne : http://dx.doi.org/10.1007/s10803-016-2723-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=288 [article] Sleep and Behavioral Problems in Children with Autism Spectrum Disorder [Texte imprimé et/ou numérique] / Micah O. MAZUREK, Auteur ; Kristin SOHL, Auteur . - p.1906-1915. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 46-6 (June 2016) . - p.1906-1915 Mots-clés : Autism  Autism spectrum disorder  Sleep  Aggression  Hyperactivity  Inattention  Behavior problems Index. décimale : PER Périodiques Résumé : Children with autism spectrum disorder (ASD) are at high risk for sleep disturbance and behavioral dysregulation. However, the relationships between these difficulties are not fully understood. The current study examined the relationships between specific types of sleep and behavioral problems among 81 children with ASD. Sleep problems were significantly associated with physical aggression, irritability, inattention, and hyperactivity. In multivariate analyses, distinct sets of sleep problems accounted for between 22 and 32 % of the variance in behavior problems across models. These results indicate that sleep disturbance is associated with behavioral dysregulation among children with ASD. Of note, night awakenings had the most consistently strong association with daytime behavior problems, even after controlling for the effects of age and sex. En ligne : http://dx.doi.org/10.1007/s10803-016-2723-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=288

They deserve the “same level of care that any other person deserves”: Caregiver perspectives on healthcare for adults on the autism spectrum / Micah O. MAZUREK in Research in Autism Spectrum Disorders, 89 (November 2021)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 89 (November 2021) . - 101862 Titre : They deserve the “same level of care that any other person deserves”: Caregiver perspectives on healthcare for adults on the autism spectrum Type de document : Texte imprimé et/ou numérique Auteurs : Micah O. MAZUREK, Auteur ; Eleonora SADIKOVA, Auteur ; Nancy C. CHEAK-ZAMORA, Auteur ; Amber HARDIN, Auteur ; Isabel HUERTA, Auteur ; Kristin SOHL, Auteur ; Beth A. MALOW, Auteur Article en page(s) : 101862 Langues : Anglais (eng) Mots-clés : Autism  Adult  Healthcare  Primary care  Mental health  Access to care Index. décimale : PER Périodiques Résumé : Background Adults on the autism spectrum are at high risk for co-occurring conditions and poor health outcomes, yet they often experience significant unmet healthcare needs. A better understanding of potential gaps and barriers is essential for improving the healthcare system. This mixed-methods study was conducted to better understand the healthcare needs and experiences of adults on the autism spectrum from the perspective of parents and caregivers. Method Twenty-four caregivers of adults on the autism spectrum (21 mothers, 2 fathers, 1 non-parent caregiver) completed surveys and participated in one of seven focus group interviews to share their perspectives regarding healthcare needs, experiences, and suggestions for improvement. Results Survey responses indicated general satisfaction with primary care; however, in-depth qualitative data analyses revealed four primary themes and 10 subthemes. The first theme focused on barriers to healthcare access and included insurance coverage, geographic distance, waitlists, and provider shortages. Caregivers also expressed dissatisfaction with healthcare quality (Theme 2), particularly a lack of provider knowledge resulting in inadequate treatment. Participants also emphasized the need for comprehensive and coordinated healthcare services (Theme 3), and described pressure on parents to advocate and coordinate care. Finally, caregivers stressed the importance of person-centered care (Theme 4), particularly the need for accommodations and rapport for adults on the spectrum. Conclusions These results indicate that the nature and quality of current healthcare services may not be adequate to meet the needs of adults on the autism spectrum. The suggestions provided by caregivers should be used to inform strategies for healthcare improvement. En ligne : https://doi.org/10.1016/j.rasd.2021.101862 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=458 [article] They deserve the “same level of care that any other person deserves”: Caregiver perspectives on healthcare for adults on the autism spectrum [Texte imprimé et/ou numérique] / Micah O. MAZUREK, Auteur ; Eleonora SADIKOVA, Auteur ; Nancy C. CHEAK-ZAMORA, Auteur ; Amber HARDIN, Auteur ; Isabel HUERTA, Auteur ; Kristin SOHL, Auteur ; Beth A. MALOW, Auteur . - 101862. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 89 (November 2021) . - 101862 Mots-clés : Autism  Adult  Healthcare  Primary care  Mental health  Access to care Index. décimale : PER Périodiques Résumé : Background Adults on the autism spectrum are at high risk for co-occurring conditions and poor health outcomes, yet they often experience significant unmet healthcare needs. A better understanding of potential gaps and barriers is essential for improving the healthcare system. This mixed-methods study was conducted to better understand the healthcare needs and experiences of adults on the autism spectrum from the perspective of parents and caregivers. Method Twenty-four caregivers of adults on the autism spectrum (21 mothers, 2 fathers, 1 non-parent caregiver) completed surveys and participated in one of seven focus group interviews to share their perspectives regarding healthcare needs, experiences, and suggestions for improvement. Results Survey responses indicated general satisfaction with primary care; however, in-depth qualitative data analyses revealed four primary themes and 10 subthemes. The first theme focused on barriers to healthcare access and included insurance coverage, geographic distance, waitlists, and provider shortages. Caregivers also expressed dissatisfaction with healthcare quality (Theme 2), particularly a lack of provider knowledge resulting in inadequate treatment. Participants also emphasized the need for comprehensive and coordinated healthcare services (Theme 3), and described pressure on parents to advocate and coordinate care. Finally, caregivers stressed the importance of person-centered care (Theme 4), particularly the need for accommodations and rapport for adults on the spectrum. Conclusions These results indicate that the nature and quality of current healthcare services may not be adequate to meet the needs of adults on the autism spectrum. The suggestions provided by caregivers should be used to inform strategies for healthcare improvement. En ligne : https://doi.org/10.1016/j.rasd.2021.101862 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=458

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