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 Auteurs : Anne LONGO, Auteur ; Daniel GILMORE, Auteur ; Jennifer H. GARVIN, Auteur ; J. Madison HYER, Auteur ; Daniel L. 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] / Anne LONGO, Auteur ; Daniel GILMORE, Auteur ; Jennifer H. GARVIN, Auteur ; J. Madison HYER, Auteur ; Daniel L. 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

''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 Auteurs : Daniel GILMORE, Auteur ; Lauren HARRIS, Auteur ; Christopher HANKS, Auteur ; Daniel L. 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] / Daniel GILMORE, Auteur ; Lauren HARRIS, Auteur ; Christopher HANKS, Auteur ; Daniel L. 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

Health status of Medicare-enrolled autistic older adults with and without co-occurring intellectual disability: An analysis of inpatient and institutional outpatient medical claims / Daniel GILMORE in Autism, 25-1 (January 2021)  

Public ISBD [article]  inAutism > 25-1 (January 2021) . - p.266-274 Titre : Health status of Medicare-enrolled autistic older adults with and without co-occurring intellectual disability: An analysis of inpatient and institutional outpatient medical claims Type de document : texte imprimé Auteurs : Daniel GILMORE, Auteur ; Lauren HARRIS, Auteur ; Anne LONGO, Auteur ; Brittany N. HAND, Auteur Article en page(s) : p.266-274 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorders  health services  intellectual disability  medical comorbidity  psychiatric comorbidity Index. décimale : PER Périodiques Résumé : Little is known about the extent to which the healthcare needs of autistic older adults with intellectual disability differ from autistic older adults without intellectual disability. Our study is the first, to our knowledge, to use US national data to compare physical and mental health conditions among autistic older adults with and without intellectual disability. The data analyzed in this study consisted of records from inpatient hospitalizations as well as "institutional outpatient" healthcare visits, which include visits to hospital outpatient departments, rural health clinics, renal dialysis facilities, outpatient rehabilitation facilities, Federally Qualified Health Centers, and community mental health centers. Autistic older adults with intellectual disability were significantly more likely to have thyroid disorders, epilepsy, respiratory infections, gastrointestinal conditions, osteoporosis, cognitive disorders, and schizophrenia/psychotic disorders. In contrast, autistic older adults without intellectual disability were significantly more likely to have obesity, diabetes, high blood pressure, cerebrovascular disease, chronic obstructive pulmonary disease, arthritis, back conditions, attention deficit disorders, substance use disorders, and suicidal ideation or intentional self-injury. These findings highlight the importance of developing distinct, tailored health management strategies for the autistic older adults with and without intellectual disability. En ligne : http://dx.doi.org/10.1177/1362361320955109 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437 [article] Health status of Medicare-enrolled autistic older adults with and without co-occurring intellectual disability: An analysis of inpatient and institutional outpatient medical claims [texte imprimé] / Daniel GILMORE, Auteur ; Lauren HARRIS, Auteur ; Anne LONGO, Auteur ; Brittany N. HAND, Auteur . - p.266-274. Langues : Anglais (eng) in Autism > 25-1 (January 2021) . - p.266-274 Mots-clés : adults  autism spectrum disorders  health services  intellectual disability  medical comorbidity  psychiatric comorbidity Index. décimale : PER Périodiques Résumé : Little is known about the extent to which the healthcare needs of autistic older adults with intellectual disability differ from autistic older adults without intellectual disability. Our study is the first, to our knowledge, to use US national data to compare physical and mental health conditions among autistic older adults with and without intellectual disability. The data analyzed in this study consisted of records from inpatient hospitalizations as well as "institutional outpatient" healthcare visits, which include visits to hospital outpatient departments, rural health clinics, renal dialysis facilities, outpatient rehabilitation facilities, Federally Qualified Health Centers, and community mental health centers. Autistic older adults with intellectual disability were significantly more likely to have thyroid disorders, epilepsy, respiratory infections, gastrointestinal conditions, osteoporosis, cognitive disorders, and schizophrenia/psychotic disorders. In contrast, autistic older adults without intellectual disability were significantly more likely to have obesity, diabetes, high blood pressure, cerebrovascular disease, chronic obstructive pulmonary disease, arthritis, back conditions, attention deficit disorders, substance use disorders, and suicidal ideation or intentional self-injury. These findings highlight the importance of developing distinct, tailored health management strategies for the autistic older adults with and without intellectual disability. En ligne : http://dx.doi.org/10.1177/1362361320955109 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437

Healthcare service use patterns among autistic adults: A systematic review with narrative synthesis / Daniel GILMORE in Autism, 26-2 (February 2022)  

Public ISBD [article]  inAutism > 26-2 (February 2022) . - p.317-331 Titre : Healthcare service use patterns among autistic adults: A systematic review with narrative synthesis Type de document : texte imprimé Auteurs : Daniel GILMORE, Auteur ; Morgan KRANTZ, Auteur ; Lindy WEAVER, Auteur ; Brittany N. HAND, Auteur Article en page(s) : p.317-331 Langues : Anglais (eng) Mots-clés : autism  health services  systematic review Index. décimale : PER Périodiques Résumé : Autistic adults often have complex healthcare needs due to factors like having other health conditions, sensory sensitivities, and limited access to healthcare providers who are trained to provide care for them. All these factors may influence the healthcare services that autistic adults use. In this review, we searched six electronic research databases to gather the most recent evidence about how often autistic adults use five important healthcare services (the emergency department, hospitalization, outpatient mental health, preventive services, and primary care) compared to populations of non-autistic adults. A total of 16 articles were ultimately included in this review. Most articles found that autistic adults had equal or higher use of healthcare services than non-autistic adults. Autistic adults frequently used the emergency department and hospital. This may indicate that routine outpatient care in the community is not meeting their needs. Our findings show the importance of improving care at this level for autistic adults to reduce overuse of the emergency department (in this article referred to as ED) and hospital. En ligne : http://dx.doi.org/10.1177/13623613211060906 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=452 [article] Healthcare service use patterns among autistic adults: A systematic review with narrative synthesis [texte imprimé] / Daniel GILMORE, Auteur ; Morgan KRANTZ, Auteur ; Lindy WEAVER, Auteur ; Brittany N. HAND, Auteur . - p.317-331. Langues : Anglais (eng) in Autism > 26-2 (February 2022) . - p.317-331 Mots-clés : autism  health services  systematic review Index. décimale : PER Périodiques Résumé : Autistic adults often have complex healthcare needs due to factors like having other health conditions, sensory sensitivities, and limited access to healthcare providers who are trained to provide care for them. All these factors may influence the healthcare services that autistic adults use. In this review, we searched six electronic research databases to gather the most recent evidence about how often autistic adults use five important healthcare services (the emergency department, hospitalization, outpatient mental health, preventive services, and primary care) compared to populations of non-autistic adults. A total of 16 articles were ultimately included in this review. Most articles found that autistic adults had equal or higher use of healthcare services than non-autistic adults. Autistic adults frequently used the emergency department and hospital. This may indicate that routine outpatient care in the community is not meeting their needs. Our findings show the importance of improving care at this level for autistic adults to reduce overuse of the emergency department (in this article referred to as ED) and hospital. En ligne : http://dx.doi.org/10.1177/13623613211060906 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=452

Short report: Patterns of US federal autism research funding during 2017-2019 / Lauren HARRIS in Autism, 25-7 (October 2021)  

Public ISBD [article]  inAutism > 25-7 (October 2021) . - p.2135-2139 Titre : Short report: Patterns of US federal autism research funding during 2017-2019 Type de document : texte imprimé Auteurs : Lauren HARRIS, Auteur ; Daniel GILMORE, Auteur ; Anne LONGO, Auteur ; Brittany N. HAND, Auteur Article en page(s) : p.2135-2139 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/therapy  Autistic Disorder/therapy  Financial Management  Humans  United States  autism  funding  research priorities Index. décimale : PER Périodiques Résumé : In 2017, an advisory board consisting of autism researchers and community members recommended that funders of autism research prioritize research projects on: (1) treatments/interventions, (2) evidence-based services, and (3) lifespan issues. To describe funding in these areas since this recommendation was made, we searched the databases of the three largest federal funders of autism research in the United States. We found that the largest portion of federal funding during 2017-2019 was awarded to research on the biology of autism (32.59%) and treatments and interventions for autism (22.87%). Less funds were awarded to research areas that are high funding priorities by the Interagency Autism Coordinating Committee budget recommendation including services (5.02%) and lifespan issues (2.51%). Our findings emphasize that autism research funding is not consistent with the Interagency Autism Coordinating Committee budget recommendation to increase funding particularly to services and lifespan issues. We recommend that funding patterns should shift to better align with these priorities so that autism research may better serve the needs of the autism community. En ligne : http://dx.doi.org/10.1177/13623613211003430 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451 [article] Short report: Patterns of US federal autism research funding during 2017-2019 [texte imprimé] / Lauren HARRIS, Auteur ; Daniel GILMORE, Auteur ; Anne LONGO, Auteur ; Brittany N. HAND, Auteur . - p.2135-2139. Langues : Anglais (eng) in Autism > 25-7 (October 2021) . - p.2135-2139 Mots-clés : Autism Spectrum Disorder/therapy  Autistic Disorder/therapy  Financial Management  Humans  United States  autism  funding  research priorities Index. décimale : PER Périodiques Résumé : In 2017, an advisory board consisting of autism researchers and community members recommended that funders of autism research prioritize research projects on: (1) treatments/interventions, (2) evidence-based services, and (3) lifespan issues. To describe funding in these areas since this recommendation was made, we searched the databases of the three largest federal funders of autism research in the United States. We found that the largest portion of federal funding during 2017-2019 was awarded to research on the biology of autism (32.59%) and treatments and interventions for autism (22.87%). Less funds were awarded to research areas that are high funding priorities by the Interagency Autism Coordinating Committee budget recommendation including services (5.02%) and lifespan issues (2.51%). Our findings emphasize that autism research funding is not consistent with the Interagency Autism Coordinating Committee budget recommendation to increase funding particularly to services and lifespan issues. We recommend that funding patterns should shift to better align with these priorities so that autism research may better serve the needs of the autism community. En ligne : http://dx.doi.org/10.1177/13623613211003430 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451

Short report: Patterns of US federal autism research funding during 2017-2019 / Lauren HARRIS in Autism, 26-7 (October 2022)  

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The Association Between Obesity and Key Health or Psychosocial Outcomes Among Autistic Adults: A Systematic Review / Daniel GILMORE in Journal of Autism and Developmental Disorders, 52-9 (September 2022)  

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