Objective:Individuals with intellectual disability (ID) experience protracted cognitive developme... more Objective:Individuals with intellectual disability (ID) experience protracted cognitive development compared to typical youth. Sensitive measurement of cognitive change in this population is a critical need for clinical trials and other intervention studies, but well-validated outcome measures are scarce. This study’s aim was to evaluate the sensitivity of the NIH-Toolbox Cognitive Battery (NIHTB-CB) to detect developmental changes in groups with ID – fragile X syndrome (FXS), Down syndrome (DS), and other intellectual disability (OID) — and to provide further support for its use as an outcome measure for treatment trials.Methods:We administered the NIHTB-CB and a reference-standard cross-validation measure (Stanford-Binet Intelligence Scales, Fifth Edition, SB5) to 256 individuals with FXS, DS, and OID (ages 6-27 years). After two years of development, we retested 197 individuals. Group developmental changes in each cognitive domain of the NIHTB-CB and SB5 were assessed using laten...
Parents of children with Developmental Disabilities (DD) face particular challenges interacting w... more Parents of children with Developmental Disabilities (DD) face particular challenges interacting with their children and have been shown to have higher levels of stress than parents of children without disabilities. A number of studies have attempted to understand the emotional climate in the homes of children with DD by examining parental Expressed Emotion (EE), or parental attitudes about the child and their relationship. However, many of these studies have been small in sample size and have only worked with one subset of the DD population. This meta-analysis examined the proportion of parents of children with DD exhibiting High EE through a statistical aggregation of effect sizes across seven studies including 600 participants. The fixed effects size proportion was .39 (SE = .02; p < .0001), indicating approximately 40% of the parents in the combined samples exhibited High EE. Results support efforts to address the needs of the whole family for children with DD in order to ensu...
ABSTRACT Speeded Matching (SpM) is a new processing speed match-to-sample test within the NIH Too... more ABSTRACT Speeded Matching (SpM) is a new processing speed match-to-sample test within the NIH Toolbox Cognitive Battery. It was designed to developmentally extend feasibility to younger children or individuals with intellectual or developmental disabilities (IDD). SpM reduces cognitive demands to tapping an identical match as opposed to judging and indicating whether two stimuli are identical. In this study, we piloted SpM among 148 participants with fragile X syndrome, Down syndrome, or other intellectual disabilities (chronological age mean = 17.8 years, sd = 5.4; nonverbal mental age mean = 65 months, sd = 19.4). SpM had a high feasibility (96%) and internal consistency (rxx = 0.98). It converged well with other measures of processing speed, fluid cognition, and nonverbal mental age and diverged appropriately from crystallized cognitive skills. The correlation between nonverbal mental age and SpM in the IDD sample was not significantly different than the correlation between chronological age and SpM in a separate sample of 118 neurotypical children (age mean = 3.9 years sd = 0.8). This study provides initial evidence for the reliability and validity of the new SpM task, which may be appropriate as an outcome measure of processing speed for future clinical trials. It is more feasible than tasks designed for adults; it is brief, easy to administer, and engaging for young children and older individuals with lower mental ages associated with IDD.
ObjectiveTo advance the science of cognitive outcome measurement for individuals with intellectua... more ObjectiveTo advance the science of cognitive outcome measurement for individuals with intellectual disability (ID), we established administration guidelines and evaluated the psychometric properties of the NIH-Toolbox Cognitive Battery (NIHTB-CB) for use in clinical research.MethodsWe assessed feasibility, test-retest reliability, and convergent validity of the NIHTB-CB (measuring executive function, processing speed, memory, and language) by assessing 242 individuals with fragile X syndrome (FXS), Down syndrome (DS), and other ID, ages 6 through 25 years, with retesting completed after 1 month. To facilitate accessibility and measurement accuracy, we developed accommodations and standard assessment guidelines, documented in an e-manual. Finally, we assessed the sensitivity of the battery to expected syndrome-specific cognitive phenotypes.ResultsAbove a mental age of 5.0 years, all tests had excellent feasibility. More varied feasibility across tests was seen between mental ages of ...
Sensitive, responsive, and dependable relationships are key to providing the support and encourag... more Sensitive, responsive, and dependable relationships are key to providing the support and encouragement all children need for optimal development. Unfortunately, parents and their young children with special needs often face behavioral challenges and life stressors related to the children's delays/disabilities that can interfere with the development of emotionally positive relationships. This study explores the usefulness of two standardized measures, the Emotional Availability Scales (EAS; Z. Biringen, J.L. Robinson, & R.N. Emde, 1998) and the Five Minute Speech Sample (FMSS; A.B. Magana-Amato, 1993), for assessing the emotional quality of relationships between parents and their children aged 3 years or younger with special needs. To date, neither measure has been used extensively with this population. Each of the 38 participating dyads included a child with an identified delay/disability. Results of the EAS suggest that it is a viable measure for assessing the relationships of parents and their young children with special needs. The FMSS results, though less clear, suggest that with certain limits, it also is a viable measure for use with this population. This study can inform the debate about the need to integrate early childhood mental health practices into all child/family services and to provide appropriate training to meet the growing demand for such relationship-based services. Abstracts translated in Spanish, French, German, and Japanese can be found on the abstract page of each article on Wiley Online Library at
Mothers of children with fragile X syndrome (FXS) face many challenges. FXS is a systemic disorde... more Mothers of children with fragile X syndrome (FXS) face many challenges. FXS is a systemic disorder that includes cognitive, physical and psychological impairments along a continuum. However, behavioral issues remain the most challenging for most families (Epstein, Riley, & Sobesky, 2002). In contrast to mothers of children with other neurodevelopmental disorders these women have the additional challenge of a distinct pheno-typic expression of their premutation carrier status, which presents its own psychological emotional challenges. The complex nature of the individuals affected by FXS and thus the interesting implications for the mother child dyad, make this population one of great interest. The purpose of this study is to explore the Expressed Emotion of mothers of children with FXS. Expressed Emotion is a construct of the familial emotional climate in which a parent (or close relative) expresses emotional involvement, hostility and/or criticism about their child (McCarty & Weisz, 2002). The primary way to measure expressed emotion is the Five Minute Speech Sample (FMSS) (Magana-Amato, 1993), which is coded through a non-scripted monologue by one of the parents. The FMSS provides a novel way of looking at the mother-child dyad in the FXS community, and provides information to guide intervention for new mothers with young children with FXS. Without pathologizing the mothers of children with FXS, the findings of this study provide insight into the expressed emotion of mothers and of children with FXS that could lead to valuable intervention strategies developed by parents and professionals. As this type of research has never been conducted generally with mothers of children with neurodevelopmen-tal disorders or specifically with those with FXS, this study was conducted as a pilot to explore both accuracy of the tool and to gain insight into this very complicated dyad.
Background: Recent advances in understanding molecular and synaptic mechanisms of intellectual di... more Background: Recent advances in understanding molecular and synaptic mechanisms of intellectual disabilities (ID) in fragile X syndrome (FXS) and Down syndrome (DS) through animal models have led to targeted controlled trials with pharmacological agents designed to normalize these underlying mechanisms and improve clinical outcomes. However, several human clinical trials have failed to demonstrate efficacy of these targeted treatments to improve surrogate behavioral endpoints. Because the ultimate index of disease modification in these disorders is amelioration of ID, the validation of cognitive measures for tracking treatment response is essential. Here, we present preliminary research to validate the National Institutes of Health Toolbox Cognitive Battery (NIH-TCB) for ID.
Objective:Individuals with intellectual disability (ID) experience protracted cognitive developme... more Objective:Individuals with intellectual disability (ID) experience protracted cognitive development compared to typical youth. Sensitive measurement of cognitive change in this population is a critical need for clinical trials and other intervention studies, but well-validated outcome measures are scarce. This study’s aim was to evaluate the sensitivity of the NIH-Toolbox Cognitive Battery (NIHTB-CB) to detect developmental changes in groups with ID – fragile X syndrome (FXS), Down syndrome (DS), and other intellectual disability (OID) — and to provide further support for its use as an outcome measure for treatment trials.Methods:We administered the NIHTB-CB and a reference-standard cross-validation measure (Stanford-Binet Intelligence Scales, Fifth Edition, SB5) to 256 individuals with FXS, DS, and OID (ages 6-27 years). After two years of development, we retested 197 individuals. Group developmental changes in each cognitive domain of the NIHTB-CB and SB5 were assessed using laten...
Parents of children with Developmental Disabilities (DD) face particular challenges interacting w... more Parents of children with Developmental Disabilities (DD) face particular challenges interacting with their children and have been shown to have higher levels of stress than parents of children without disabilities. A number of studies have attempted to understand the emotional climate in the homes of children with DD by examining parental Expressed Emotion (EE), or parental attitudes about the child and their relationship. However, many of these studies have been small in sample size and have only worked with one subset of the DD population. This meta-analysis examined the proportion of parents of children with DD exhibiting High EE through a statistical aggregation of effect sizes across seven studies including 600 participants. The fixed effects size proportion was .39 (SE = .02; p < .0001), indicating approximately 40% of the parents in the combined samples exhibited High EE. Results support efforts to address the needs of the whole family for children with DD in order to ensu...
ABSTRACT Speeded Matching (SpM) is a new processing speed match-to-sample test within the NIH Too... more ABSTRACT Speeded Matching (SpM) is a new processing speed match-to-sample test within the NIH Toolbox Cognitive Battery. It was designed to developmentally extend feasibility to younger children or individuals with intellectual or developmental disabilities (IDD). SpM reduces cognitive demands to tapping an identical match as opposed to judging and indicating whether two stimuli are identical. In this study, we piloted SpM among 148 participants with fragile X syndrome, Down syndrome, or other intellectual disabilities (chronological age mean = 17.8 years, sd = 5.4; nonverbal mental age mean = 65 months, sd = 19.4). SpM had a high feasibility (96%) and internal consistency (rxx = 0.98). It converged well with other measures of processing speed, fluid cognition, and nonverbal mental age and diverged appropriately from crystallized cognitive skills. The correlation between nonverbal mental age and SpM in the IDD sample was not significantly different than the correlation between chronological age and SpM in a separate sample of 118 neurotypical children (age mean = 3.9 years sd = 0.8). This study provides initial evidence for the reliability and validity of the new SpM task, which may be appropriate as an outcome measure of processing speed for future clinical trials. It is more feasible than tasks designed for adults; it is brief, easy to administer, and engaging for young children and older individuals with lower mental ages associated with IDD.
ObjectiveTo advance the science of cognitive outcome measurement for individuals with intellectua... more ObjectiveTo advance the science of cognitive outcome measurement for individuals with intellectual disability (ID), we established administration guidelines and evaluated the psychometric properties of the NIH-Toolbox Cognitive Battery (NIHTB-CB) for use in clinical research.MethodsWe assessed feasibility, test-retest reliability, and convergent validity of the NIHTB-CB (measuring executive function, processing speed, memory, and language) by assessing 242 individuals with fragile X syndrome (FXS), Down syndrome (DS), and other ID, ages 6 through 25 years, with retesting completed after 1 month. To facilitate accessibility and measurement accuracy, we developed accommodations and standard assessment guidelines, documented in an e-manual. Finally, we assessed the sensitivity of the battery to expected syndrome-specific cognitive phenotypes.ResultsAbove a mental age of 5.0 years, all tests had excellent feasibility. More varied feasibility across tests was seen between mental ages of ...
Sensitive, responsive, and dependable relationships are key to providing the support and encourag... more Sensitive, responsive, and dependable relationships are key to providing the support and encouragement all children need for optimal development. Unfortunately, parents and their young children with special needs often face behavioral challenges and life stressors related to the children's delays/disabilities that can interfere with the development of emotionally positive relationships. This study explores the usefulness of two standardized measures, the Emotional Availability Scales (EAS; Z. Biringen, J.L. Robinson, & R.N. Emde, 1998) and the Five Minute Speech Sample (FMSS; A.B. Magana-Amato, 1993), for assessing the emotional quality of relationships between parents and their children aged 3 years or younger with special needs. To date, neither measure has been used extensively with this population. Each of the 38 participating dyads included a child with an identified delay/disability. Results of the EAS suggest that it is a viable measure for assessing the relationships of parents and their young children with special needs. The FMSS results, though less clear, suggest that with certain limits, it also is a viable measure for use with this population. This study can inform the debate about the need to integrate early childhood mental health practices into all child/family services and to provide appropriate training to meet the growing demand for such relationship-based services. Abstracts translated in Spanish, French, German, and Japanese can be found on the abstract page of each article on Wiley Online Library at
Mothers of children with fragile X syndrome (FXS) face many challenges. FXS is a systemic disorde... more Mothers of children with fragile X syndrome (FXS) face many challenges. FXS is a systemic disorder that includes cognitive, physical and psychological impairments along a continuum. However, behavioral issues remain the most challenging for most families (Epstein, Riley, & Sobesky, 2002). In contrast to mothers of children with other neurodevelopmental disorders these women have the additional challenge of a distinct pheno-typic expression of their premutation carrier status, which presents its own psychological emotional challenges. The complex nature of the individuals affected by FXS and thus the interesting implications for the mother child dyad, make this population one of great interest. The purpose of this study is to explore the Expressed Emotion of mothers of children with FXS. Expressed Emotion is a construct of the familial emotional climate in which a parent (or close relative) expresses emotional involvement, hostility and/or criticism about their child (McCarty & Weisz, 2002). The primary way to measure expressed emotion is the Five Minute Speech Sample (FMSS) (Magana-Amato, 1993), which is coded through a non-scripted monologue by one of the parents. The FMSS provides a novel way of looking at the mother-child dyad in the FXS community, and provides information to guide intervention for new mothers with young children with FXS. Without pathologizing the mothers of children with FXS, the findings of this study provide insight into the expressed emotion of mothers and of children with FXS that could lead to valuable intervention strategies developed by parents and professionals. As this type of research has never been conducted generally with mothers of children with neurodevelopmen-tal disorders or specifically with those with FXS, this study was conducted as a pilot to explore both accuracy of the tool and to gain insight into this very complicated dyad.
Background: Recent advances in understanding molecular and synaptic mechanisms of intellectual di... more Background: Recent advances in understanding molecular and synaptic mechanisms of intellectual disabilities (ID) in fragile X syndrome (FXS) and Down syndrome (DS) through animal models have led to targeted controlled trials with pharmacological agents designed to normalize these underlying mechanisms and improve clinical outcomes. However, several human clinical trials have failed to demonstrate efficacy of these targeted treatments to improve surrogate behavioral endpoints. Because the ultimate index of disease modification in these disorders is amelioration of ID, the validation of cognitive measures for tracking treatment response is essential. Here, we present preliminary research to validate the National Institutes of Health Toolbox Cognitive Battery (NIH-TCB) for ID.
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Papers by Jeanine Coleman