Centre d'Information et de documentation du CRA Rhône-Alpes
CRA
Informations pratiques
-
Adresse
Centre d'information et de documentation
du CRA Rhône-Alpes
Centre Hospitalier le Vinatier
bât 211
95, Bd Pinel
69678 Bron CedexHoraires
Lundi au Vendredi
9h00-12h00 13h30-16h00Contact
Tél: +33(0)4 37 91 54 65
Mail
Fax: +33(0)4 37 91 54 37
-
Résultat de la recherche
2 recherche sur le mot-clé 'Promis'
Affiner la recherche Générer le flux rss de la recherche
Partager le résultat de cette recherche Faire une suggestion
Measuring subjective quality of life in autistic adults with the PROMIS global-10: Psychometric study and development of an autism-specific scoring method / Zachary J. WILLIAMS in Autism, 27-1 (January 2023)
[article]
Titre : Measuring subjective quality of life in autistic adults with the PROMIS global-10: Psychometric study and development of an autism-specific scoring method Type de document : Texte imprimé et/ou numérique Auteurs : Zachary J. WILLIAMS, Auteur ; Carissa J. CASCIO, Auteur ; Tiffany G. WOYNAROSKI, Auteur Article en page(s) : p.145-157 Langues : Anglais (eng) Mots-clés : adults behavioral measurement item response theory mental health physical health PROMIS psychometrics quality of life reliability validity Index. décimale : PER Périodiques Résumé : Quality of life is widely acknowledged as one of the most important outcomes in autism research, but few measures of this construct have been validated for use in autistic people. The goal of the current study was to examine the psychometric properties of the Patient-Reported Outcomes Measurement Information System Global-10, an established self-report measure of health-related quality of life, in a sample of 901 autistic adults (predominantly female and adult-diagnosed) recruited from the Simons Foundation Powering Autism Research for Knowledge cohort. Using an item response theory framework, we performed a comprehensive psychometric evaluation of the Patient-Reported Outcomes Measurement Information System Global-10 in this sample, examining its latent structure, differential item functioning, reliability, and construct validity. After developing an autism-specific measurement model, the Patient-Reported Outcomes Measurement Information System Global-10 demonstrated excellent psychometric properties in the current sample, including excellent model-data fit, high reliability, minimal differential item functioning across subgroups of autistic adults, and an expected pattern of correlations with external variables. Exploratory analyses indicated that lower quality of life was associated with female sex and identified as a sexual/gender minority. A free online score calculator has been created to facilitate the use and interpretation of normed Patient-Reported Outcomes Measurement Information System Global-10 general quality of life latent trait scores for clinical and research applications (available at https://asdmeasures.shinyapps.io/promis_qol). Lay Abstract Quality of Life an outcome that both researchers and autistic advocates agree is extremely important to consider when implementing services, interventions, and supports for autistic people. However, there has been little research on the topic of how quality of life can best be measured in autistic people or whether existing quality of life questionnaires are appropriate for use in the autistic population. This study aimed to validate an established quality of life measure, the Patient-Reported Outcomes Measurement Information System Global-10, in a large sample of autistic adults recruited online. We created a new way to score the Patient-Reported Outcomes Measurement Information System Global-10 scale and generate a œGeneral quality of life score specific to autistic adults. This new score performed very well in this sample, showing very little measurement error and relating in expected ways to similar constructs, such as physical health and emotional distress. Exploratory analyses found that lower quality of life was associated with female sex and self-identification as a sexual or gender minority (i.e. LGBTQ + identity). These findings suggest that the new Patient-Reported Outcomes Measurement Information System Global-10 quality of life score is a reliable and valid measure of quality of life in autistic adults, although additional studies are necessary to further explore its measurement properties in other subsets of the autistic population, such as individuals with intellectual disabilities. This measure is freely available for use as an outcome in both research and clinical practice, and an online score calculator is available to support the use of this measure in real-world applications. En ligne : http://dx.doi.org/10.1177/13623613221085364 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=491
in Autism > 27-1 (January 2023) . - p.145-157[article] Measuring subjective quality of life in autistic adults with the PROMIS global-10: Psychometric study and development of an autism-specific scoring method [Texte imprimé et/ou numérique] / Zachary J. WILLIAMS, Auteur ; Carissa J. CASCIO, Auteur ; Tiffany G. WOYNAROSKI, Auteur . - p.145-157.
Langues : Anglais (eng)
in Autism > 27-1 (January 2023) . - p.145-157
Mots-clés : adults behavioral measurement item response theory mental health physical health PROMIS psychometrics quality of life reliability validity Index. décimale : PER Périodiques Résumé : Quality of life is widely acknowledged as one of the most important outcomes in autism research, but few measures of this construct have been validated for use in autistic people. The goal of the current study was to examine the psychometric properties of the Patient-Reported Outcomes Measurement Information System Global-10, an established self-report measure of health-related quality of life, in a sample of 901 autistic adults (predominantly female and adult-diagnosed) recruited from the Simons Foundation Powering Autism Research for Knowledge cohort. Using an item response theory framework, we performed a comprehensive psychometric evaluation of the Patient-Reported Outcomes Measurement Information System Global-10 in this sample, examining its latent structure, differential item functioning, reliability, and construct validity. After developing an autism-specific measurement model, the Patient-Reported Outcomes Measurement Information System Global-10 demonstrated excellent psychometric properties in the current sample, including excellent model-data fit, high reliability, minimal differential item functioning across subgroups of autistic adults, and an expected pattern of correlations with external variables. Exploratory analyses indicated that lower quality of life was associated with female sex and identified as a sexual/gender minority. A free online score calculator has been created to facilitate the use and interpretation of normed Patient-Reported Outcomes Measurement Information System Global-10 general quality of life latent trait scores for clinical and research applications (available at https://asdmeasures.shinyapps.io/promis_qol). Lay Abstract Quality of Life an outcome that both researchers and autistic advocates agree is extremely important to consider when implementing services, interventions, and supports for autistic people. However, there has been little research on the topic of how quality of life can best be measured in autistic people or whether existing quality of life questionnaires are appropriate for use in the autistic population. This study aimed to validate an established quality of life measure, the Patient-Reported Outcomes Measurement Information System Global-10, in a large sample of autistic adults recruited online. We created a new way to score the Patient-Reported Outcomes Measurement Information System Global-10 scale and generate a œGeneral quality of life score specific to autistic adults. This new score performed very well in this sample, showing very little measurement error and relating in expected ways to similar constructs, such as physical health and emotional distress. Exploratory analyses found that lower quality of life was associated with female sex and self-identification as a sexual or gender minority (i.e. LGBTQ + identity). These findings suggest that the new Patient-Reported Outcomes Measurement Information System Global-10 quality of life score is a reliable and valid measure of quality of life in autistic adults, although additional studies are necessary to further explore its measurement properties in other subsets of the autistic population, such as individuals with intellectual disabilities. This measure is freely available for use as an outcome in both research and clinical practice, and an online score calculator is available to support the use of this measure in real-world applications. En ligne : http://dx.doi.org/10.1177/13623613221085364 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=491 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