Assessing general cognitive and adaptive abilities in adults with Down syndrome: a systematic review / Sarah HAMBURG in Journal of Neurodevelopmental Disorders, 11-1 (December 2019)  

Public ISBD [article]  inJournal of Neurodevelopmental Disorders > 11-1 (December 2019) . - 20 p. Titre : Assessing general cognitive and adaptive abilities in adults with Down syndrome: a systematic review Type de document : texte imprimé Auteurs : Sarah HAMBURG, Auteur ; Bryony LOWE, Auteur ; Carla Marie STARTIN, Auteur ; Concepcion PADILLA, Auteur ; Antonia COPPUS, Auteur ; Wendy SILVERMAN, Auteur ; Juan FORTEA, Auteur ; Shahid ZAMAN, Auteur ; Elizabeth HEAD, Auteur ; Benjamin L. HANDEN, Auteur ; Ira LOTT, Auteur ; Weihong SONG, Auteur ; Andre STRYDOM, Auteur Article en page(s) : 20 p. Langues : Anglais (eng) Mots-clés : Ab  Adaptive ability  Adaptive behaviour  Cognition  Down syndrome  General ability  Iq  Intelligence Index. décimale : PER Périodiques Résumé : BACKGROUND: Measures of general cognitive and adaptive ability in adults with Down syndrome (DS) used by previous studies vary substantially. This review summarises the different ability measures used previously, focusing on tests of intelligence quotient (IQ) and adaptive behaviour (AB), and where possible examines floor effects and differences between DS subpopulations. We aimed to use information regarding existing measures to provide recommendations for individual researchers and the DS research community. RESULTS: Nineteen studies reporting IQ test data met inclusion for this review, with 17 different IQ tests used. Twelve of these IQ tests were used in only one study while five were used in two different studies. Eleven studies reporting AB test data met inclusion for this review, with seven different AB tests used. The only AB scales to be used by more than one study were the Vineland Adaptive Behaviour Scale (VABS; used by three studies) and the Vineland Adaptive Behavior Scale 2nd Edition (VABS-II; used by two studies). A variety of additional factors were identified which make comparison of test scores between studies problematic, including different score types provided between studies (e.g. raw scores compared to age-equivalent scores) and different participant inclusion criteria (e.g. whether individuals with cognitive decline were excluded). Floor effects were common for IQ tests (particularly for standardised test scores). Data exists to suggest that floor effects may be minimised by the use of raw test scores rather than standardised test scores. Raw scores may, therefore, be particularly useful in longitudinal studies to track change in cognitive ability over time. CONCLUSIONS: Studies assessing general ability in adults with DS are likely to benefit from the use of both IQ and AB scales. The DS research community may benefit from the development of reporting standards for IQ and AB data, and from the sharing of raw study data enabling further in-depth investigation of issues highlighted by this review. En ligne : https://dx.doi.org/10.1186/s11689-019-9279-8 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=409 [article] Assessing general cognitive and adaptive abilities in adults with Down syndrome: a systematic review [texte imprimé] / Sarah HAMBURG, Auteur ; Bryony LOWE, Auteur ; Carla Marie STARTIN, Auteur ; Concepcion PADILLA, Auteur ; Antonia COPPUS, Auteur ; Wendy SILVERMAN, Auteur ; Juan FORTEA, Auteur ; Shahid ZAMAN, Auteur ; Elizabeth HEAD, Auteur ; Benjamin L. HANDEN, Auteur ; Ira LOTT, Auteur ; Weihong SONG, Auteur ; Andre STRYDOM, Auteur . - 20 p. Langues : Anglais (eng) in Journal of Neurodevelopmental Disorders > 11-1 (December 2019) . - 20 p. Mots-clés : Ab  Adaptive ability  Adaptive behaviour  Cognition  Down syndrome  General ability  Iq  Intelligence Index. décimale : PER Périodiques Résumé : BACKGROUND: Measures of general cognitive and adaptive ability in adults with Down syndrome (DS) used by previous studies vary substantially. This review summarises the different ability measures used previously, focusing on tests of intelligence quotient (IQ) and adaptive behaviour (AB), and where possible examines floor effects and differences between DS subpopulations. We aimed to use information regarding existing measures to provide recommendations for individual researchers and the DS research community. RESULTS: Nineteen studies reporting IQ test data met inclusion for this review, with 17 different IQ tests used. Twelve of these IQ tests were used in only one study while five were used in two different studies. Eleven studies reporting AB test data met inclusion for this review, with seven different AB tests used. The only AB scales to be used by more than one study were the Vineland Adaptive Behaviour Scale (VABS; used by three studies) and the Vineland Adaptive Behavior Scale 2nd Edition (VABS-II; used by two studies). A variety of additional factors were identified which make comparison of test scores between studies problematic, including different score types provided between studies (e.g. raw scores compared to age-equivalent scores) and different participant inclusion criteria (e.g. whether individuals with cognitive decline were excluded). Floor effects were common for IQ tests (particularly for standardised test scores). Data exists to suggest that floor effects may be minimised by the use of raw test scores rather than standardised test scores. Raw scores may, therefore, be particularly useful in longitudinal studies to track change in cognitive ability over time. CONCLUSIONS: Studies assessing general ability in adults with DS are likely to benefit from the use of both IQ and AB scales. The DS research community may benefit from the development of reporting standards for IQ and AB data, and from the sharing of raw study data enabling further in-depth investigation of issues highlighted by this review. En ligne : https://dx.doi.org/10.1186/s11689-019-9279-8 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=409

Behavioral and psychological symptoms of dementia and Alzheimer's disease progression in Down syndrome / Melissa R. JENKINS in Journal of Neurodevelopmental Disorders, 17 (2025)  

Public ISBD [article]  inJournal of Neurodevelopmental Disorders > 17 (2025) Titre : Behavioral and psychological symptoms of dementia and Alzheimer's disease progression in Down syndrome Type de document : texte imprimé Auteurs : Melissa R. JENKINS, Auteur ; Jamie C. PEVEN, Auteur ; Lauren KUBIC, Auteur ; Benjamin L. HANDEN, Auteur ; Sharon J. KRINSKY-MCHALE, Auteur ; Christy L. HOM, Auteur ; Alice LEE, Auteur ; Dana L. TUDORASCU, Auteur ; Max MCLACHLAN, Auteur ; Matthew ZAMMIT, Auteur ; Davneet MINHAS, Auteur ; Weiquan LUO, Auteur ; Charles LAYMON, Auteur ; Joseph H. LEE, Auteur ; Ira LOTT, Auteur ; Annie COHEN, Auteur ; Beau M. ANCES, Auteur ; H. Diana ROSAS, Auteur ; Florence LAI, Auteur ; Shahid H. ZAMAN, Auteur ; Elizabeth HEAD, Auteur ; Mark MAPSTONE, Auteur ; Bradley T. CHRISTIAN, Auteur ; Sigan L. HARTLEY, Auteur ; ALZHEIMER BIOMARKER CONSORTIUM - DOWN SYNDROME, Auteur Langues : Anglais (eng) Mots-clés : Humans  Down Syndrome/complications/psychology/diagnostic imaging  Male  Female  Alzheimer Disease/psychology/diagnostic  imaging/complications/metabolism/physiopathology  Disease Progression  Middle Aged  Dementia/psychology/diagnostic imaging/complications/physiopathology  Adult  Positron-Emission Tomography  Cognitive Dysfunction/diagnostic imaging/psychology  Amyloid beta-Peptides/metabolism  Cohort Studies  Aged  Alzheimer’s disease  Amyloid  Down syndrome  Psychiatric symptoms  Tau  was approved by the Internal Review Boards of the University of Pittsburgh,  University of Wisconsin Madison, and University of California, Irvine. Consent  for publication: Not applicable. Competing interests: The authors declare no  competing interests. Index. décimale : PER Périodiques Résumé : BACKGROUND: Adults with Down syndrome (DS) have a 90% lifetime risk for Alzheimer's disease (AD), with neurobiological pathology present decades prior to dementia onset. The profile and timing of cognitive decline in DS is well-documented. However, there is a small body of research on whether Behavioral and Psychological Symptoms of Dementia (BPSD) occur early on in the progression of AD in DS and are associated with early AD pathology (i.e., amyloid-beta [Aβ] and neurofibrillary tau tangles [NFT]). METHODS: Data were analyzed from 337 adults with DS (M = 45.13 years, SD = 9.53 years) enrolled in a large cohort study. The Reiss Screen for Maladaptive Behavior (RSMB) measured common behaviors reported in BPSD across up to four study cycles (spaced approximately 16 months apart). Linear mixed models estimated change in BPSD as predicted by baseline (a) dementia status (i.e., cognitively stable, mild cognitive impairment [MCI], or dementia), (b) Aβ positron emission tomography (PET) tracer [(11)C] PiB, and (c) NFT PET tracer [(18)F]AV-1451. Models controlled for chronological age, sex, study site, premorbid intellectual disability level, APOE e4 allele carrier status, psychiatric diagnoses, and psychiatric medication use. RESULTS: Compared to cognitively stable participants, participants whose status was MCI or dementia, had significantly higher baseline RSMB subdomain scores. Increases in RSMB Depression-Behavioral, Depression-Physical, and Psychosis were observed for participants with MCI. Higher baseline Aβ and NFT were associated with higher RSMB Avoidant at baseline, and increases in RSMB Depression-Physical and Psychosis over time. CONCLUSIONS: BPSD are an important part of AD in DS, particularly during the prodromal stage. Elevated Aβ and NFT predict higher initial avoidance and change in physical depression behaviors and may indicate MCI in adults with DS. Broader increases in BPSD are observed as adults with DS progress from early to late-stage dementia. Clinicians should rule out other possible causes of BPSD when screening for AD, such as stressful life experiences or co-occurring medical conditions. Caregivers of adults with DS should have resources on BPSD management and self-care strategies. En ligne : https://dx.doi.org/10.1186/s11689-025-09604-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=576 [article] Behavioral and psychological symptoms of dementia and Alzheimer's disease progression in Down syndrome [texte imprimé] / Melissa R. JENKINS, Auteur ; Jamie C. PEVEN, Auteur ; Lauren KUBIC, Auteur ; Benjamin L. HANDEN, Auteur ; Sharon J. KRINSKY-MCHALE, Auteur ; Christy L. HOM, Auteur ; Alice LEE, Auteur ; Dana L. TUDORASCU, Auteur ; Max MCLACHLAN, Auteur ; Matthew ZAMMIT, Auteur ; Davneet MINHAS, Auteur ; Weiquan LUO, Auteur ; Charles LAYMON, Auteur ; Joseph H. LEE, Auteur ; Ira LOTT, Auteur ; Annie COHEN, Auteur ; Beau M. ANCES, Auteur ; H. Diana ROSAS, Auteur ; Florence LAI, Auteur ; Shahid H. ZAMAN, Auteur ; Elizabeth HEAD, Auteur ; Mark MAPSTONE, Auteur ; Bradley T. CHRISTIAN, Auteur ; Sigan L. HARTLEY, Auteur ; ALZHEIMER BIOMARKER CONSORTIUM - DOWN SYNDROME, Auteur. Langues : Anglais (eng) in Journal of Neurodevelopmental Disorders > 17 (2025) Mots-clés : Humans  Down Syndrome/complications/psychology/diagnostic imaging  Male  Female  Alzheimer Disease/psychology/diagnostic  imaging/complications/metabolism/physiopathology  Disease Progression  Middle Aged  Dementia/psychology/diagnostic imaging/complications/physiopathology  Adult  Positron-Emission Tomography  Cognitive Dysfunction/diagnostic imaging/psychology  Amyloid beta-Peptides/metabolism  Cohort Studies  Aged  Alzheimer’s disease  Amyloid  Down syndrome  Psychiatric symptoms  Tau  was approved by the Internal Review Boards of the University of Pittsburgh,  University of Wisconsin Madison, and University of California, Irvine. Consent  for publication: Not applicable. Competing interests: The authors declare no  competing interests. Index. décimale : PER Périodiques Résumé : BACKGROUND: Adults with Down syndrome (DS) have a 90% lifetime risk for Alzheimer's disease (AD), with neurobiological pathology present decades prior to dementia onset. The profile and timing of cognitive decline in DS is well-documented. However, there is a small body of research on whether Behavioral and Psychological Symptoms of Dementia (BPSD) occur early on in the progression of AD in DS and are associated with early AD pathology (i.e., amyloid-beta [Aβ] and neurofibrillary tau tangles [NFT]). METHODS: Data were analyzed from 337 adults with DS (M = 45.13 years, SD = 9.53 years) enrolled in a large cohort study. The Reiss Screen for Maladaptive Behavior (RSMB) measured common behaviors reported in BPSD across up to four study cycles (spaced approximately 16 months apart). Linear mixed models estimated change in BPSD as predicted by baseline (a) dementia status (i.e., cognitively stable, mild cognitive impairment [MCI], or dementia), (b) Aβ positron emission tomography (PET) tracer [(11)C] PiB, and (c) NFT PET tracer [(18)F]AV-1451. Models controlled for chronological age, sex, study site, premorbid intellectual disability level, APOE e4 allele carrier status, psychiatric diagnoses, and psychiatric medication use. RESULTS: Compared to cognitively stable participants, participants whose status was MCI or dementia, had significantly higher baseline RSMB subdomain scores. Increases in RSMB Depression-Behavioral, Depression-Physical, and Psychosis were observed for participants with MCI. Higher baseline Aβ and NFT were associated with higher RSMB Avoidant at baseline, and increases in RSMB Depression-Physical and Psychosis over time. CONCLUSIONS: BPSD are an important part of AD in DS, particularly during the prodromal stage. Elevated Aβ and NFT predict higher initial avoidance and change in physical depression behaviors and may indicate MCI in adults with DS. Broader increases in BPSD are observed as adults with DS progress from early to late-stage dementia. Clinicians should rule out other possible causes of BPSD when screening for AD, such as stressful life experiences or co-occurring medical conditions. Caregivers of adults with DS should have resources on BPSD management and self-care strategies. En ligne : https://dx.doi.org/10.1186/s11689-025-09604-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=576

Conducting clinical trials in persons with Down syndrome: summary from the NIH INCLUDE Down syndrome clinical trials readiness working group / Nicole T. BAUMER in Journal of Neurodevelopmental Disorders, 14 (2022)  

Public ISBD [article]  inJournal of Neurodevelopmental Disorders > 14 (2022) Titre : Conducting clinical trials in persons with Down syndrome: summary from the NIH INCLUDE Down syndrome clinical trials readiness working group Type de document : texte imprimé Auteurs : Nicole T. BAUMER, Auteur ; Mara L. BECKER, Auteur ; George T. CAPONE, Auteur ; Kathleen EGAN, Auteur ; Juan FORTEA, Auteur ; Benjamin L. HANDEN, Auteur ; Elizabeth HEAD, Auteur ; James E. HENDRIX, Auteur ; Ruth Y. LITOVSKY, Auteur ; Andre STRYDOM, Auteur ; Ignacio E. TAPIA, Auteur ; Michael S. RAFII, Auteur Langues : Anglais (eng) Mots-clés : Cohort Studies  Down Syndrome/complications/therapy  Humans  Clinical research  Clinical trials  Down syndrome  Intellectual disability  Recruitment  Research engagement Index. décimale : PER Périodiques Résumé : The recent National Institute of Health (NIH) INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) initiative has bolstered capacity for the current increase in clinical trials involving individuals with Down syndrome (DS). This new NIH funding mechanism offers new opportunities to expand and develop novel approaches in engaging and effectively enrolling a broader representation of clinical trials participants addressing current medical issues faced by individuals with DS. To address this opportunity, the NIH assembled leading clinicians, scientists, and representatives of advocacy groups to review existing methods and to identify those areas where new approaches are needed to engage and prepare DS populations for participation in clinical trial research. This paper summarizes the results of the Clinical Trial Readiness Working Group that was part of the INCLUDE Project Workshop: Planning a Virtual Down Syndrome Cohort Across the Lifespan Workshop held virtually September 23 and 24, 2019. En ligne : https://dx.doi.org/10.1186/s11689-022-09435-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=574 [article] Conducting clinical trials in persons with Down syndrome: summary from the NIH INCLUDE Down syndrome clinical trials readiness working group [texte imprimé] / Nicole T. BAUMER, Auteur ; Mara L. BECKER, Auteur ; George T. CAPONE, Auteur ; Kathleen EGAN, Auteur ; Juan FORTEA, Auteur ; Benjamin L. HANDEN, Auteur ; Elizabeth HEAD, Auteur ; James E. HENDRIX, Auteur ; Ruth Y. LITOVSKY, Auteur ; Andre STRYDOM, Auteur ; Ignacio E. TAPIA, Auteur ; Michael S. RAFII, Auteur. Langues : Anglais (eng) in Journal of Neurodevelopmental Disorders > 14 (2022) Mots-clés : Cohort Studies  Down Syndrome/complications/therapy  Humans  Clinical research  Clinical trials  Down syndrome  Intellectual disability  Recruitment  Research engagement Index. décimale : PER Périodiques Résumé : The recent National Institute of Health (NIH) INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) initiative has bolstered capacity for the current increase in clinical trials involving individuals with Down syndrome (DS). This new NIH funding mechanism offers new opportunities to expand and develop novel approaches in engaging and effectively enrolling a broader representation of clinical trials participants addressing current medical issues faced by individuals with DS. To address this opportunity, the NIH assembled leading clinicians, scientists, and representatives of advocacy groups to review existing methods and to identify those areas where new approaches are needed to engage and prepare DS populations for participation in clinical trial research. This paper summarizes the results of the Clinical Trial Readiness Working Group that was part of the INCLUDE Project Workshop: Planning a Virtual Down Syndrome Cohort Across the Lifespan Workshop held virtually September 23 and 24, 2019. En ligne : https://dx.doi.org/10.1186/s11689-022-09435-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=574

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