A Lifespan Approach to Patient-Reported Outcomes and Quality of Life for People on the Autism Spectrum / Laura GRAHAM HOLMES in Autism Research, 13-6 (June 2020)  

Public ISBD [article]  inAutism Research > 13-6 (June 2020) . - p.970-987 Titre : A Lifespan Approach to Patient-Reported Outcomes and Quality of Life for People on the Autism Spectrum Type de document : Texte imprimé et/ou numérique Auteurs : Laura GRAHAM HOLMES, Auteur ; Casey J. ZAMPELLA, Auteur ; Caitlin C. CLEMENTS, Auteur ; Joseph P. MCCLEERY, Auteur ; Brenna B MADDOX, Auteur ; Julia PARISH-MORRIS, Auteur ; Manisha D. UDHNANI, Auteur ; Robert T. SCHULTZ, Auteur ; Judith S. MILLER, Auteur Article en page(s) : p.970-987 Langues : Anglais (eng) Mots-clés : adults  life course  life span/lifespan  patient-reported outcomes  quality of life  sex/gender  women with autism Index. décimale : PER Périodiques Résumé : Autistic self-advocates, family members, and community organizations have called for greater emphasis on enhancing quality of life (QoL) for people with autism. Doing this is critical to understand how QoL unfolds across the life course and to clarify whether gender affects QoL, health, and functioning for people with autism. The purpose of this study was to curate and test a lifespan QoL measurement tool using freely available and well-constructed National Institutes of Health Parent-Reported Outcomes Measurement Information System (PROMIS). To develop the PROMIS Autism Battery-Lifespan (PAB-L), we identified PROMIS scales relevant for autism, reviewed each item, consulted with a panel of autism experts, and elicited feedback from autistic people and family members. This battery provides a comprehensive portrait of QoL for children ages 5-13 (through parent proxy), teens 14-17 (parent proxy and self-report), and adults 18-65 (self-report) with autism compared to the general population. Participants and parent informants (N =?912) recruited through a children's hospital and nationwide U.S. autism research registry completed the PAB-L online. Results indicate that compared to general population norms, people with autism of all ages (or their proxies) reported less desirable outcomes and lower QoL across all domains. Women and girls experienced greater challenges in some areas compared to men and boys with autism. The PAB-L appears to be a feasible and acceptable method for assessing patient-reported outcomes and QoL for autistic people across the life course. Autism Res 2020, 13: 970-987. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: We developed a survey to measure the quality of life of children, teens, and adults with autism using free National Institutes of Health PROMIS questionnaires. People with autism and family members rated the PROMIS Autism Battery-Lifespan as useful and important. Some reported a good quality of life, while many reported that their lives were not going as well as they wanted. Women and girls reported more challenges in some areas of life than men and boys. En ligne : http://dx.doi.org/10.1002/aur.2275 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=427 [article] A Lifespan Approach to Patient-Reported Outcomes and Quality of Life for People on the Autism Spectrum [Texte imprimé et/ou numérique] / Laura GRAHAM HOLMES, Auteur ; Casey J. ZAMPELLA, Auteur ; Caitlin C. CLEMENTS, Auteur ; Joseph P. MCCLEERY, Auteur ; Brenna B MADDOX, Auteur ; Julia PARISH-MORRIS, Auteur ; Manisha D. UDHNANI, Auteur ; Robert T. SCHULTZ, Auteur ; Judith S. MILLER, Auteur . - p.970-987. Langues : Anglais (eng) in Autism Research > 13-6 (June 2020) . - p.970-987 Mots-clés : adults  life course  life span/lifespan  patient-reported outcomes  quality of life  sex/gender  women with autism Index. décimale : PER Périodiques Résumé : Autistic self-advocates, family members, and community organizations have called for greater emphasis on enhancing quality of life (QoL) for people with autism. Doing this is critical to understand how QoL unfolds across the life course and to clarify whether gender affects QoL, health, and functioning for people with autism. The purpose of this study was to curate and test a lifespan QoL measurement tool using freely available and well-constructed National Institutes of Health Parent-Reported Outcomes Measurement Information System (PROMIS). To develop the PROMIS Autism Battery-Lifespan (PAB-L), we identified PROMIS scales relevant for autism, reviewed each item, consulted with a panel of autism experts, and elicited feedback from autistic people and family members. This battery provides a comprehensive portrait of QoL for children ages 5-13 (through parent proxy), teens 14-17 (parent proxy and self-report), and adults 18-65 (self-report) with autism compared to the general population. Participants and parent informants (N =?912) recruited through a children's hospital and nationwide U.S. autism research registry completed the PAB-L online. Results indicate that compared to general population norms, people with autism of all ages (or their proxies) reported less desirable outcomes and lower QoL across all domains. Women and girls experienced greater challenges in some areas compared to men and boys with autism. The PAB-L appears to be a feasible and acceptable method for assessing patient-reported outcomes and QoL for autistic people across the life course. Autism Res 2020, 13: 970-987. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: We developed a survey to measure the quality of life of children, teens, and adults with autism using free National Institutes of Health PROMIS questionnaires. People with autism and family members rated the PROMIS Autism Battery-Lifespan as useful and important. Some reported a good quality of life, while many reported that their lives were not going as well as they wanted. Women and girls reported more challenges in some areas of life than men and boys. En ligne : http://dx.doi.org/10.1002/aur.2275 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=427

Safety and Feasibility of an Immersive Virtual Reality Intervention Program for Teaching Police Interaction Skills to Adolescents and Adults with Autism / Joseph P. MCCLEERY in Autism Research, 13-8 (August 2020)  

Public ISBD [article]  inAutism Research > 13-8 (August 2020) . - p.1418-1424 Titre : Safety and Feasibility of an Immersive Virtual Reality Intervention Program for Teaching Police Interaction Skills to Adolescents and Adults with Autism Type de document : Texte imprimé et/ou numérique Auteurs : Joseph P. MCCLEERY, Auteur ; Ashley ZITTER, Auteur ; Rita SOLORZANO, Auteur ; Sinan TURNACIOGLU, Auteur ; Judith S. MILLER, Auteur ; Vijay RAVINDRAN, Auteur ; Julia PARISH-MORRIS, Auteur Article en page(s) : p.1418-1424 Langues : Anglais (eng) Mots-clés : adolescents  adults  autism spectrum disorder  feasibility  immersive virtual reality  intervention  safety Index. décimale : PER Périodiques Résumé : Low-cost, wireless immersive virtual reality (VR) holds significant promise as a flexible and scalable intervention tool to help individuals with autism spectrum disorder (ASD) learn and develop critical practical life skills, including interacting safely and effectively with police officers. Previous research suggests that VR is a motivating intervention platform, but many individuals with ASD also exhibit anxiety and sensory sensitivities which might make it difficult to tolerate VR experiences. Here, we describe the results of a relatively large-scale, National Institutes of Health-funded systematic examination of the safety, feasibility, and usability of an immersive VR training program in adolescents and adults with ASD, aged 12 and older. Sixty verbally fluent individuals with no personal or immediate family history of seizures or migraines participated in either one (n = 30) or three 45-min (n = 30) VR sessions using a lightweight wireless headset, and were monitored for side effects. Participants also reported on system usability, enjoyment, and willingness to engage in further VR sessions. Results confirm that immersive VR is safe, feasible, and highly usable for verbally fluent adolescents and adults with ASD. LAY SUMMARY: Immersive virtual reality (VR) holds promise as a means to provide social skills interventions for individuals with autism spectrum disorder (ASD), but it is unclear whether associated anxiety and sensory symptoms might limit feasibility. Here, we report data that indicate that immersive VR is both safe and feasible for use in verbally fluent adolescents and adults with ASD, for up to three 45-min sessions. Autism Res 2020, 13: 1418-1424. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. En ligne : http://dx.doi.org/10.1002/aur.2352 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=430 [article] Safety and Feasibility of an Immersive Virtual Reality Intervention Program for Teaching Police Interaction Skills to Adolescents and Adults with Autism [Texte imprimé et/ou numérique] / Joseph P. MCCLEERY, Auteur ; Ashley ZITTER, Auteur ; Rita SOLORZANO, Auteur ; Sinan TURNACIOGLU, Auteur ; Judith S. MILLER, Auteur ; Vijay RAVINDRAN, Auteur ; Julia PARISH-MORRIS, Auteur . - p.1418-1424. Langues : Anglais (eng) in Autism Research > 13-8 (August 2020) . - p.1418-1424 Mots-clés : adolescents  adults  autism spectrum disorder  feasibility  immersive virtual reality  intervention  safety Index. décimale : PER Périodiques Résumé : Low-cost, wireless immersive virtual reality (VR) holds significant promise as a flexible and scalable intervention tool to help individuals with autism spectrum disorder (ASD) learn and develop critical practical life skills, including interacting safely and effectively with police officers. Previous research suggests that VR is a motivating intervention platform, but many individuals with ASD also exhibit anxiety and sensory sensitivities which might make it difficult to tolerate VR experiences. Here, we describe the results of a relatively large-scale, National Institutes of Health-funded systematic examination of the safety, feasibility, and usability of an immersive VR training program in adolescents and adults with ASD, aged 12 and older. Sixty verbally fluent individuals with no personal or immediate family history of seizures or migraines participated in either one (n = 30) or three 45-min (n = 30) VR sessions using a lightweight wireless headset, and were monitored for side effects. Participants also reported on system usability, enjoyment, and willingness to engage in further VR sessions. Results confirm that immersive VR is safe, feasible, and highly usable for verbally fluent adolescents and adults with ASD. LAY SUMMARY: Immersive virtual reality (VR) holds promise as a means to provide social skills interventions for individuals with autism spectrum disorder (ASD), but it is unclear whether associated anxiety and sensory symptoms might limit feasibility. Here, we report data that indicate that immersive VR is both safe and feasible for use in verbally fluent adolescents and adults with ASD, for up to three 45-min sessions. Autism Res 2020, 13: 1418-1424. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. En ligne : http://dx.doi.org/10.1002/aur.2352 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=430

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