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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)
[article]
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
in Autism Research > 13-6 (June 2020) . - p.970-987[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 Using percentiles in the interpretation of Patient-Reported Outcomes Measurement Information System scores: Guidelines for autism / Julia SCHUCHARD in Autism Research, 15-12 (December 2022)
[article]
Titre : Using percentiles in the interpretation of Patient-Reported Outcomes Measurement Information System scores: Guidelines for autism Type de document : Texte imprimé et/ou numérique Auteurs : Julia SCHUCHARD, Auteur ; Elizabeth A. KAPLAN-KAHN, Auteur ; Adam C CARLE, Auteur ; Laura GRAHAM HOLMES, Auteur ; Kiely LAW, Auteur ; Judith S MILLER, Auteur ; Julia PARISH-MORRIS, Auteur ; Christopher B. FORREST, Auteur Article en page(s) : p.2336-2345 Langues : Anglais (eng) Mots-clés : Child Adolescent Humans United States Child, Preschool Autistic Disorder/complications/diagnosis Surveys and Questionnaires Quality of Life Autism Spectrum Disorder Patient Reported Outcome Measures Sleep Wake Disorders/diagnosis/epidemiology Information Systems Promis autism material hardship parent-report patient-reported outcomes Index. décimale : PER Périodiques Résumé : The objectives of this study were to (1) demonstrate the application of percentiles to advance the interpretation of patient-reported outcomes and (2) establish autism-specific percentiles for four Patient-Reported Outcomes Measurement Information System (PROMIS) measures. PROMIS measures were completed by parents of autistic children and adolescents ages 5-17 years as part of two studies (n = 939 parents in the first study and n = 406 parents in the second study). Data from the first study were used to develop autism-specific percentiles for PROMIS parent-proxy sleep disturbance, sleep-related impairment, fatigue, and anxiety. Previously established United States general population percentiles were applied to interpret PROMIS scores in both studies. Results of logistic regression models showed that parent-reported material hardship was associated with scoring in the moderate-severe range (defined as â¥75th percentile in the general population) on all four PROMIS measures (odds ratios 1.7-2.2). In the second study, the percentage of children with severe scores (defined as â¥95th percentile in the general population) was 30% for anxiety, 25% for sleep disturbance, and 17% for sleep-related impairment, indicating a high burden of these problems among autistic children. Few children had scores at or above the autism-specific 95th percentile on these measures (3%-4%), indicating that their scores were similar to other autistic children. The general population and condition-specific percentiles provide two complementary reference points to aid interpretation of PROMIS scores, including corresponding severity categories that are comparable across different PROMIS measures. En ligne : http://dx.doi.org/10.1002/aur.2833 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488
in Autism Research > 15-12 (December 2022) . - p.2336-2345[article] Using percentiles in the interpretation of Patient-Reported Outcomes Measurement Information System scores: Guidelines for autism [Texte imprimé et/ou numérique] / Julia SCHUCHARD, Auteur ; Elizabeth A. KAPLAN-KAHN, Auteur ; Adam C CARLE, Auteur ; Laura GRAHAM HOLMES, Auteur ; Kiely LAW, Auteur ; Judith S MILLER, Auteur ; Julia PARISH-MORRIS, Auteur ; Christopher B. FORREST, Auteur . - p.2336-2345.
Langues : Anglais (eng)
in Autism Research > 15-12 (December 2022) . - p.2336-2345
Mots-clés : Child Adolescent Humans United States Child, Preschool Autistic Disorder/complications/diagnosis Surveys and Questionnaires Quality of Life Autism Spectrum Disorder Patient Reported Outcome Measures Sleep Wake Disorders/diagnosis/epidemiology Information Systems Promis autism material hardship parent-report patient-reported outcomes Index. décimale : PER Périodiques Résumé : The objectives of this study were to (1) demonstrate the application of percentiles to advance the interpretation of patient-reported outcomes and (2) establish autism-specific percentiles for four Patient-Reported Outcomes Measurement Information System (PROMIS) measures. PROMIS measures were completed by parents of autistic children and adolescents ages 5-17 years as part of two studies (n = 939 parents in the first study and n = 406 parents in the second study). Data from the first study were used to develop autism-specific percentiles for PROMIS parent-proxy sleep disturbance, sleep-related impairment, fatigue, and anxiety. Previously established United States general population percentiles were applied to interpret PROMIS scores in both studies. Results of logistic regression models showed that parent-reported material hardship was associated with scoring in the moderate-severe range (defined as â¥75th percentile in the general population) on all four PROMIS measures (odds ratios 1.7-2.2). In the second study, the percentage of children with severe scores (defined as â¥95th percentile in the general population) was 30% for anxiety, 25% for sleep disturbance, and 17% for sleep-related impairment, indicating a high burden of these problems among autistic children. Few children had scores at or above the autism-specific 95th percentile on these measures (3%-4%), indicating that their scores were similar to other autistic children. The general population and condition-specific percentiles provide two complementary reference points to aid interpretation of PROMIS scores, including corresponding severity categories that are comparable across different PROMIS measures. En ligne : http://dx.doi.org/10.1002/aur.2833 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488