Addressing medical needs of adolescents and adults with autism spectrum disorders in a primary care setting / Youssra SAQR in Autism, 22-1 (January 2018)  

Public ISBD [article]  inAutism > 22-1 (January 2018) . - p.51-61 Titre : Addressing medical needs of adolescents and adults with autism spectrum disorders in a primary care setting Type de document : Texte imprimé et/ou numérique Auteurs : Youssra SAQR, Auteur ; Erika BRAUN, Auteur ; Kyle PORTER, Auteur ; Debra BARNETTE, Auteur ; Christopher HANKS, Auteur Article en page(s) : p.51-61 Langues : Anglais (eng) Mots-clés : adolescents,adults,autism spectrum disorders,health services,medical comorbidity Index. décimale : PER Périodiques Résumé : Little has been reported about how to improve health care access and delivery for adolescents and adults with autism spectrum disorder. To understand the contributions to the health disparities in the autism spectrum disorder population, we conducted two independent research approaches to learn about current medical needs. A retrospective chart review was performed to evaluate medical comorbidities and medication use. A focus group was also created to address barriers faced in providing medical care. Of 126 charts reviewed, 49% (n?=?62) had intellectual disability, 49% (n?=?62) had attention-deficit hyperactivity disorder, 52% (n?=?65) had anxiety, 41% (n?=?52) had obesity, 31% (n?=?39) with a history of aggressive behavior, 31% (n?=?31) had depression, 22% (n?=?28) had seizures, and 9% (n?=?11) had hypertension. A Medical Regimen Complexity Index score was determined to examine medication use trends in the autism spectrum disorder population. Medical Regimen Complexity Index scores were significantly higher for patients with intellectual disability, patients with seizures, and patients with a history of aggressive behavior. Both the focus group and our pre-visit assessment identified the waiting room and waiting time as barriers to care. Understanding the comorbidities, polypharmacy, and medical barriers should provide a better understanding of the current health care access and delivery needs of adolescents and adults with autism spectrum disorder. En ligne : https://doi.org/10.1177/1362361317709970 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=335 [article] Addressing medical needs of adolescents and adults with autism spectrum disorders in a primary care setting [Texte imprimé et/ou numérique] / Youssra SAQR, Auteur ; Erika BRAUN, Auteur ; Kyle PORTER, Auteur ; Debra BARNETTE, Auteur ; Christopher HANKS, Auteur . - p.51-61. Langues : Anglais (eng) in Autism > 22-1 (January 2018) . - p.51-61 Mots-clés : adolescents,adults,autism spectrum disorders,health services,medical comorbidity Index. décimale : PER Périodiques Résumé : Little has been reported about how to improve health care access and delivery for adolescents and adults with autism spectrum disorder. To understand the contributions to the health disparities in the autism spectrum disorder population, we conducted two independent research approaches to learn about current medical needs. A retrospective chart review was performed to evaluate medical comorbidities and medication use. A focus group was also created to address barriers faced in providing medical care. Of 126 charts reviewed, 49% (n?=?62) had intellectual disability, 49% (n?=?62) had attention-deficit hyperactivity disorder, 52% (n?=?65) had anxiety, 41% (n?=?52) had obesity, 31% (n?=?39) with a history of aggressive behavior, 31% (n?=?31) had depression, 22% (n?=?28) had seizures, and 9% (n?=?11) had hypertension. A Medical Regimen Complexity Index score was determined to examine medication use trends in the autism spectrum disorder population. Medical Regimen Complexity Index scores were significantly higher for patients with intellectual disability, patients with seizures, and patients with a history of aggressive behavior. Both the focus group and our pre-visit assessment identified the waiting room and waiting time as barriers to care. Understanding the comorbidities, polypharmacy, and medical barriers should provide a better understanding of the current health care access and delivery needs of adolescents and adults with autism spectrum disorder. En ligne : https://doi.org/10.1177/1362361317709970 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=335

Characteristics associated with healthcare independence among autistic adults / Anne LONGO in Research in Autism Spectrum Disorders, 95 (July 2022)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 95 (July 2022) . - 101972 Titre : Characteristics associated with healthcare independence among autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Anne LONGO, Auteur ; Dan GILMORE, Auteur ; Jennifer GARVIN, Auteur ; J. Madison HYER, Auteur ; Daniel COURY, Auteur ; Christopher HANKS, Auteur ; Susan MOFFATT-BRUCE, Auteur ; Amy HESS, Auteur ; Brittany N. HAND, Auteur Article en page(s) : 101972 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Adults  Healthcare independence  Healthcare transition  Autism Index. décimale : PER Périodiques Résumé : Background Healthcare independence refers to someone?s ability to assume responsibility for their own health and complete tasks like taking medication as prescribed or scheduling healthcare appointments. Prior studies have shown that autistic people tend to need more support with healthcare tasks than people with other chronic conditions. We sought to identify modifiable and non-modifiable factors linked with healthcare independence among autistic adults. Method We conducted a cross-sectional survey to examine how executive functioning skills, restrictive and repetitive behaviors, gender, education, and age were linked with healthcare independence among this population. Participants included: (a) autistic adults (n = 19) who are their own legal guardian, who participated via self-report; and (b) family members of autistic adults with a legal guardian (n = 11), who provided proxy-reports. Results Findings differed between self- and proxy-reports. Among autistic adults who self-reported, difficulties in executive functioning were strongly linked with less healthcare independence. Among proxy-reports, greater restrictive and repetitive behaviors were strongly linked with less healthcare independence. According to the proxy-reports, having not completed high school, being older during the healthcare transition, and being male were all independently linked with less healthcare independence. Conclusions Interventions aimed at supporting executive functioning, providing opportunities to increase independence with healthcare tasks, and reducing the extent to which restrictive and repetitive behaviors interfere with daily activities may be viable options for supporting healthcare independence among autistic adults. Our findings are an important first step for future initiatives to better identify individuals who need additional care coordination, supports, or services to maximize healthcare independence. En ligne : https://doi.org/10.1016/j.rasd.2022.101972 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475 [article] Characteristics associated with healthcare independence among autistic adults [Texte imprimé et/ou numérique] / Anne LONGO, Auteur ; Dan GILMORE, Auteur ; Jennifer GARVIN, Auteur ; J. Madison HYER, Auteur ; Daniel COURY, Auteur ; Christopher HANKS, Auteur ; Susan MOFFATT-BRUCE, Auteur ; Amy HESS, Auteur ; Brittany N. HAND, Auteur . - 101972. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 95 (July 2022) . - 101972 Mots-clés : Autism spectrum disorder  Adults  Healthcare independence  Healthcare transition  Autism Index. décimale : PER Périodiques Résumé : Background Healthcare independence refers to someone?s ability to assume responsibility for their own health and complete tasks like taking medication as prescribed or scheduling healthcare appointments. Prior studies have shown that autistic people tend to need more support with healthcare tasks than people with other chronic conditions. We sought to identify modifiable and non-modifiable factors linked with healthcare independence among autistic adults. Method We conducted a cross-sectional survey to examine how executive functioning skills, restrictive and repetitive behaviors, gender, education, and age were linked with healthcare independence among this population. Participants included: (a) autistic adults (n = 19) who are their own legal guardian, who participated via self-report; and (b) family members of autistic adults with a legal guardian (n = 11), who provided proxy-reports. Results Findings differed between self- and proxy-reports. Among autistic adults who self-reported, difficulties in executive functioning were strongly linked with less healthcare independence. Among proxy-reports, greater restrictive and repetitive behaviors were strongly linked with less healthcare independence. According to the proxy-reports, having not completed high school, being older during the healthcare transition, and being male were all independently linked with less healthcare independence. Conclusions Interventions aimed at supporting executive functioning, providing opportunities to increase independence with healthcare tasks, and reducing the extent to which restrictive and repetitive behaviors interfere with daily activities may be viable options for supporting healthcare independence among autistic adults. Our findings are an important first step for future initiatives to better identify individuals who need additional care coordination, supports, or services to maximize healthcare independence. En ligne : https://doi.org/10.1016/j.rasd.2022.101972 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475

Continuation of Pediatric Care after Transfer to Adult Care Among Autistic Youth Overlap of Pediatric and Adult Care / Joseph SIRRIANNI in Journal of Autism and Developmental Disorders, 55-4 (April 2024)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-4 (April 2024) . - p.1203-1214 Titre : Continuation of Pediatric Care after Transfer to Adult Care Among Autistic Youth Overlap of Pediatric and Adult Care Type de document : Texte imprimé et/ou numérique Auteurs : Joseph SIRRIANNI, Auteur ; Christopher HANKS, Auteur ; Steve RUST, Auteur ; Laura C. HART, Auteur Article en page(s) : p.1203-1214 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : The transition from pediatric to adult health care is a vulnerable time period for autistic adolescents and young adults (AYA) and for some autistic AYA may include a period of receiving care in both the pediatric and adult health systems. We sought to assess the proportion of autistic AYA who continued to use pediatric health services after their first adult primary care appointment and to identify factors associated with continued pediatric contact. We analyzed electronic medical record (EMR) data from a cohort of autistic AYA seen in a primary-care-based program for autistic people. Using logistic and linear regression, we assessed the relationship between eight patient characteristics and (1) the odds of a patient having ANY pediatric visits after their first adult appointment and (2) the number of pediatric visits among those with at least one pediatric visit. The cohort included 230 autistic AYA, who were mostly white (68%), mostly male (82%), with a mean age of 19.4 years at the time of their last pediatric visit before entering adult care. The majority (n = 149; 65%) had pediatric contact after the first adult visit. Younger age at the time of the first adult visit and more pediatric visits prior to the first adult visit were associated with continued pediatric contact. In this cohort of autistic AYA, most patients had contact with the pediatric system after their first adult primary care appointment. En ligne : https://doi.org/10.1007/s10803-024-06314-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=550 [article] Continuation of Pediatric Care after Transfer to Adult Care Among Autistic Youth Overlap of Pediatric and Adult Care [Texte imprimé et/ou numérique] / Joseph SIRRIANNI, Auteur ; Christopher HANKS, Auteur ; Steve RUST, Auteur ; Laura C. HART, Auteur . - p.1203-1214. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-4 (April 2024) . - p.1203-1214 Index. décimale : PER Périodiques Résumé : The transition from pediatric to adult health care is a vulnerable time period for autistic adolescents and young adults (AYA) and for some autistic AYA may include a period of receiving care in both the pediatric and adult health systems. We sought to assess the proportion of autistic AYA who continued to use pediatric health services after their first adult primary care appointment and to identify factors associated with continued pediatric contact. We analyzed electronic medical record (EMR) data from a cohort of autistic AYA seen in a primary-care-based program for autistic people. Using logistic and linear regression, we assessed the relationship between eight patient characteristics and (1) the odds of a patient having ANY pediatric visits after their first adult appointment and (2) the number of pediatric visits among those with at least one pediatric visit. The cohort included 230 autistic AYA, who were mostly white (68%), mostly male (82%), with a mean age of 19.4 years at the time of their last pediatric visit before entering adult care. The majority (n = 149; 65%) had pediatric contact after the first adult visit. Younger age at the time of the first adult visit and more pediatric visits prior to the first adult visit were associated with continued pediatric contact. In this cohort of autistic AYA, most patients had contact with the pediatric system after their first adult primary care appointment. En ligne : https://doi.org/10.1007/s10803-024-06314-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=550

Correction: Continuation of Pediatric Care after Transfer to Adult Care Among Autistic Youth Overlap of Pediatric and Adult Care / Joseph SIRRIANNI in Journal of Autism and Developmental Disorders, 54-11 (November)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 54-11 (November) . - p.4354-4354 Titre : Correction: Continuation of Pediatric Care after Transfer to Adult Care Among Autistic Youth Overlap of Pediatric and Adult Care Type de document : Texte imprimé et/ou numérique Auteurs : Joseph SIRRIANNI, Auteur ; Christopher HANKS, Auteur ; Steve RUST, Auteur ; Laura C. HART, Auteur Article en page(s) : p.4354-4354 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : https://doi.org/10.1007/s10803-024-06393-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=537 [article] Correction: Continuation of Pediatric Care after Transfer to Adult Care Among Autistic Youth Overlap of Pediatric and Adult Care [Texte imprimé et/ou numérique] / Joseph SIRRIANNI, Auteur ; Christopher HANKS, Auteur ; Steve RUST, Auteur ; Laura C. HART, Auteur . - p.4354-4354. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 54-11 (November) . - p.4354-4354 Index. décimale : PER Périodiques En ligne : https://doi.org/10.1007/s10803-024-06393-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=537

''Giving the patients less work'': A thematic analysis of telehealth use and recommendations to improve usability for autistic adults / Daniel GILMORE in Autism, 27-4 (May 2023)  

Public ISBD [article]  inAutism > 27-4 (May 2023) . - p.1132-1141 Titre : ''Giving the patients less work'': A thematic analysis of telehealth use and recommendations to improve usability for autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Daniel GILMORE, Auteur ; Lauren HARRIS, Auteur ; Christopher HANKS, Auteur ; Daniel COURY, Auteur ; Susan MOFFATT-BRUCE, Auteur ; Jennifer H GARVIN, Auteur ; Brittany N HAND, Auteur Article en page(s) : p.1132-1141 Langues : Anglais (eng) Mots-clés : autism,primary care,telehealth,virtual visit Index. décimale : PER Périodiques Résumé : Virtual visits are a telehealth service where patients and providers communicate in real-time using audio and/or video technology. Setting up a virtual visit is complex and may pose challenges for some autistic adults. We conducted semi-structured interviews with autistic adults (n=7), family members of autistic adults (n=12), and clinic personnel (n=6) from one US-based clinic and used thematic analysis to identify factors affecting usability of virtual visits. We found virtual visit preparation involves multiple contacts between clinic personnel and patients or family members via a variety of channels and usability was affected by technology considerations, logistical considerations, and expectations for visits. Participants said technological experience and using the patient portal enhanced usability, but technological issues could increase anxiety. Clinic personnel reported time constraints created logistical barriers to virtual visits; streamlining the process before the visit via the patient portal may improve the usability of virtual visits for autistic adults, family members, and clinic personnel. Participants also reported unclear expectations for virtual visits reduced usability and recommended reminders, instructional videos, and estimated wait-times to clarify expectations. While our findings are based on a single clinic, they may help inform usability improvement efforts in other clinics offering virtual visits for autistic adults.Lay abstractReal-time telehealth visits, called ''virtual visits,'' are live video chats between patients and healthcare professionals. There are lots of steps involved in setting up a virtual visit, which may be difficult for some autistic adults. We interviewed 7 autistic adults, 12 family members of autistic adults, and 6 clinic staff from one clinic in the United States. Our goal was to understand their experiences with virtual visits and see how we can make virtual visits easier to use. We re-read text from the interviews to organize experiences and advice that was shared into topics. We found that autistic adults (or their family members) had to connect with clinic staff many times by phone or online over several days to set up a virtual visit. Participants said that having more experience with technology and using the online patient portal made virtual visits easier to use. But, having issues with technology before the visit could make autistic adults and family members anxious. Clinic staff said it was hard for them to meet the needs of people who were using virtual visits and those who were being seen in person at the clinic. Participants recommended reducing the number of calls between staff and autistic adults or family members using the online patient portal instead. Participants also recommended reminder messages, instruction videos, and approximate wait-times to help autistic adults and family members know what to expect for the virtual visit. Our results are based on peoples' experiences at one clinic, but could help other clinics make virtual visits easier to use for autistic adults and their family members. En ligne : https://doi.org/10.1177/13623613221132422 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] ''Giving the patients less work'': A thematic analysis of telehealth use and recommendations to improve usability for autistic adults [Texte imprimé et/ou numérique] / Daniel GILMORE, Auteur ; Lauren HARRIS, Auteur ; Christopher HANKS, Auteur ; Daniel COURY, Auteur ; Susan MOFFATT-BRUCE, Auteur ; Jennifer H GARVIN, Auteur ; Brittany N HAND, Auteur . - p.1132-1141. Langues : Anglais (eng) in Autism > 27-4 (May 2023) . - p.1132-1141 Mots-clés : autism,primary care,telehealth,virtual visit Index. décimale : PER Périodiques Résumé : Virtual visits are a telehealth service where patients and providers communicate in real-time using audio and/or video technology. Setting up a virtual visit is complex and may pose challenges for some autistic adults. We conducted semi-structured interviews with autistic adults (n=7), family members of autistic adults (n=12), and clinic personnel (n=6) from one US-based clinic and used thematic analysis to identify factors affecting usability of virtual visits. We found virtual visit preparation involves multiple contacts between clinic personnel and patients or family members via a variety of channels and usability was affected by technology considerations, logistical considerations, and expectations for visits. Participants said technological experience and using the patient portal enhanced usability, but technological issues could increase anxiety. Clinic personnel reported time constraints created logistical barriers to virtual visits; streamlining the process before the visit via the patient portal may improve the usability of virtual visits for autistic adults, family members, and clinic personnel. Participants also reported unclear expectations for virtual visits reduced usability and recommended reminders, instructional videos, and estimated wait-times to clarify expectations. While our findings are based on a single clinic, they may help inform usability improvement efforts in other clinics offering virtual visits for autistic adults.Lay abstractReal-time telehealth visits, called ''virtual visits,'' are live video chats between patients and healthcare professionals. There are lots of steps involved in setting up a virtual visit, which may be difficult for some autistic adults. We interviewed 7 autistic adults, 12 family members of autistic adults, and 6 clinic staff from one clinic in the United States. Our goal was to understand their experiences with virtual visits and see how we can make virtual visits easier to use. We re-read text from the interviews to organize experiences and advice that was shared into topics. We found that autistic adults (or their family members) had to connect with clinic staff many times by phone or online over several days to set up a virtual visit. Participants said that having more experience with technology and using the online patient portal made virtual visits easier to use. But, having issues with technology before the visit could make autistic adults and family members anxious. Clinic staff said it was hard for them to meet the needs of people who were using virtual visits and those who were being seen in person at the clinic. Participants recommended reducing the number of calls between staff and autistic adults or family members using the online patient portal instead. Participants also recommended reminder messages, instruction videos, and approximate wait-times to help autistic adults and family members know what to expect for the virtual visit. Our results are based on peoples' experiences at one clinic, but could help other clinics make virtual visits easier to use for autistic adults and their family members. En ligne : https://doi.org/10.1177/13623613221132422 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Implementation and Evolution of a Primary Care-Based Program for Adolescents and Young Adults on the Autism Spectrum / Laura C. HART in Journal of Autism and Developmental Disorders, 52-7 (July 2022)  

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