iBehavior-a preliminary proof of concept study of a smartphone-based tool for the assessment of behavior change in neurodevelopmental disabilities.

Purpose: The purpose of the present study was to describe the content and function of iBehavior, a smartphone-based caregiver-report electronic ecological momentary assessment (eEMA) tool developed to assess and track behavior change in people with intellectual and developmental disabilities (IDDs), and to examine its preliminary validity. Methods: Ten parents of children (ages of 5-17 years) with IDDs (n = 7 with fragile X syndrome; n = 3 with Down syndrome) rated their child's behavior (aggression and irritability, avoidant and fearful behavior, restricted and repetitive behavior and interests, and social initiation) using iBehavior once daily for 14 days. At the conclusion of the 14-day observation period, parents completed traditional rating scales as validation measures, as well as a user feedback survey. Results: Across the 140 possible observations, 8 were skipped, leading to a 94% response rate over 10 participants' observation periods. Participants also completed 100% of items for each of their logged observations. Parent ratings using iBehavior showed emerging evidence of convergent validity among domains with traditional rating scales including the Behavior Rating Inventory of Executive Function 2 (BRIEF-2), and Aberrant Behavior Checklist-Community (ABC-C). iBehavior was feasible in the sample, and parent feedback indicated high overall satisfaction. Conclusion: Results of the present pilot study indicate successful implementation and preliminary feasibility and validity of an eEMA tool for use as a behavioral outcome measure in IDDs.

iBehavior - A Smartphone-Based Ecological Momentary Assessment Tool for the Assessment of Behavior Change in Neurodevelopmental Disorders.

The purpose of the present study was to describe the content and function of iBehavior, a smartphone-based caregiver-report electronic ecological momentary assessment (eEMA) tool developed to assess and track behavior change in people with intellectual and developmental disabilities (IDDs), and to examine its preliminary validity. Ten parents of children (ages of 5-17 years) with IDDs (n = 7 with fragile X syndrome; n = 3 with Down syndrome) rated their child's behavior (aggression and irritability, avoidant and fearful behavior, restricted and repetitive behavior and interests, and social initiation) using iBehavior once daily for 14 days. At the conclusion of the 14-day observation period, parents completed traditional rating scales as validation measures, as well as a user feedback survey. Parent ratings using iBehavior showed emerging evidence of convergent validity among domains with traditional rating scales including the Behavior Rating Inventory of Executive Function 2 (BRIEF-2), Aberrant Behavior Checklist - Community (ABC-C), and Conners 3. iBehavior was feasible in our sample, and parent feedback indicated high overall satisfaction. Results of the present pilot study indicate successful implementation and preliminary feasibility and validity of an eEMA tool for use as a behavioral outcome measure in IDDs.

Cognitive Training Deep Dive: The Impact of Child, Training Behavior and Environmental Factors within a Controlled Trial of Cogmed for Fragile X Syndrome.

Children with fragile X syndrome (FXS) exhibit deficits in a variety of cognitive processes within the executive function domain. As working memory (WM) is known to support a wide range of cognitive, learning and adaptive functions, WM computer-based training programs have the potential to benefit people with FXS and other forms of intellectual and developmental disability (IDD). However, research on the effectiveness of WM training has been mixed. The current study is a follow-up "deep dive" into the data collected during a randomized controlled trial of Cogmed (Stockholm, Sweden) WM training in children with FXS. Analyses characterized the training data, identified training quality metrics, and identified subgroups of participants with similar training patterns. Child, parent, home environment and training quality metrics were explored in relation to the clinical outcomes during the WM training intervention. Baseline cognitive level and training behavior metrics were linked to gains in WM performance-based assessments and also to reductions in inattention and other behaviors related to executive functioning during the intervention. The results also support a recommendation that future cognitive intervention trials with individuals with IDD such as FXS include additional screening of participants to determine not only baseline feasibility, but also capacity for training progress over a short period prior to inclusion and randomization. This practice may also better identify individuals with IDD who are more likely to benefit from cognitive training in clinical and educational settings.

Associated Risk Factors for Depression and Anxiety in Adults With Intellectual and Developmental Disabilities: Five-Year Follow Up.

A better understanding of the factors associated with depression and anxiety in people with intellectual and developmental disabilities (IDD) is needed to provide guidelines for service providers, clinicians, and researchers as well as to improve the diagnostic process. The current study used a longitudinal dataset to explore demographic, health, and psychosocial risk factors of anxiety and depression in adults with IDD. Women were more likely to have depression while older adults, people with autism, and people with hearing impairments, were more likely to have anxiety. Chronic health conditions were associated with both anxiety and depression, while changes in stressful life events were associated with an increased risk of anxiety. Clinical and research contributions are discussed.

Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities.

INTRODUCTION: A specially commissioned working group produced a report on caregiving, intellectual and developmental disabilities (IDDs), and dementia for the National Institutes of Health-located National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. METHODS: Experts in caregiving, dementia, and IDDs examined the current state of research, policy, and practice related to caregiving and supports; identified the similarities and dissimilarities between IDD-related care and services and the general population affected by dementia; and considered how these findings might contribute to the conversation on developing a dementia care research and services development agenda. RESULTS: Five major areas related to programs and caregiving were assessed: (1) challenges of dementia; (2) family caregiving interventions; (3) supportive care settings; (4) effects of diversity; and (5) bridging service networks of aging and disability. DISCUSSION: Recommendations included increasing supports for caregivers of adults with IDDs and dementia; increasing research on community living settings and including caregivers of persons with IDDs in dementia research; acknowledging cultural values and practice diversity in caregiving; increasing screening for dementia and raising awareness; and leveraging integration of aging and disability networks.

Comparisons of self and proxy report on health-related factors in people with intellectual disability.

BACKGROUND: The intellectual disability field has learned about the lives of people with intellectual disabilities (ID), largely from the perspective of their family and caregivers. Information from caregivers has been critical to scientific advancement, especially when caregivers are engaged on behalf of individuals with significant language impairment. On the other hand, the perspective of individuals with ID themselves is critical for internal subjective content such as thoughts and feelings. METHODS: Participants were 90 adults with ID and a proxy of their choosing. RESULTS: Overall, self and caregiver report were significantly related for subjective health but varied for physical activity, social support and stress. CONCLUSIONS: These findings add to the growing literature establishing the importance of considering the self-report of adults with ID, particularity when the subject matter focuses on internal thoughts or feelings. Clinical considerations for the use of self and proxy report are discussed.

Systematic Review of Health Promotion Programs Focused on Behavioral Changes for People With Intellectual Disability.

People with intellectual disability (ID) experience high rates of chronic health problems and poor overall health compared to people without disabilities. Recent attention to health risk behaviors such as poor diet, lack of physical activity, and underuse of health care has led to the development of several programs intended to reduce disparities in this population through health promotion programs. A review of the literature was conducted focusing on programs developed to target behavioral changes in the person with ID. Thirteen studies, evaluating 10 different health promotion programs, were found. Programs varied significantly in design, targeted health change, and demonstrated effectiveness. Components of each program are systematically reviewed and recommendations made for future programs based upon the current evidence.

National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities.

BACKGROUND: People with disabilities experience worse health and poorer access to health care compared to people without disability. Large-scale health surveillance efforts have largely excluded adults with intellectual and developmental disability. This study expands knowledge of health status, health risks and preventative health care in a representative US sample comparing the health of adults with no disability to adults with intellectual and developmental disability and to adults with other types of disability. OBJECTIVES: The purposes of this study were (1) to identify disparities between adults with intellectual and developmental disability and adults with no disability and (2) compare this pattern of disparities to the pattern between adults with other types of disability and adults without disability. METHODS: This study compares health status, health risks and preventative health care in a national sample across three groups of adults: No Disability, Disability, and Intellectual and Developmental Disability. Data sources were the 2010 Behavior Risk Factor Surveillance Survey and the National Core Indicators Consumer Survey. RESULTS: Adults with disability and with intellectual and developmental disability were more likely to report being in poor health compared to adults without disability. Disability and intellectual and developmental disability conferred unique health risks and health care utilization patterns. CONCLUSIONS: Significant disparities in health and health care utilization were found for adults with disability and developmental disability relative to adults without disability. Disability training for health care providers and health promotion research that identifies disability as a demographic group is needed.

Race and health disparities in adults with intellectual and developmental disabilities living in the United States.

Research has documented disparities in health care and access for people with intellectual and developmental disabilities (IDD) and people in racial and ethnic minority groups. Though both populations are underserved, the additive impact of being both a member of a racial/ethnic minority and having IDD is largely unknown. This study uses data from a nationally representative survey to explore health service utilization among adults with IDD belonging to minority racial/ethnic groups compared to adults with IDD who are White. The results of this study indicated that racial/ethnic minority groups are disadvantaged in several essential areas of health care utilization and that Hispanic Americans are particularly underserved. Additional research is needed to identify and address the factors driving this difference.

Mental health for people with intellectual disability: the impact of stress and social support.

A large, nationally representative sample from a preexisting dataset, the National Core Indicators, was used to examine the impact of stress and social support on the mental health of adults with intellectual disability (ID). Stress was significantly correlated with both mental illness and severity of behavior problems, with each additional stressor increasing the odds of poor mental health by 20%. This relationship held, even after controlling for level of ID, gender, and place of residence. Lack of social support was associated with having a mental illness; individuals who lacked social support were twice as likely to have a mental illness. The importance of considering these factors in the prevention, diagnosis, and treatment of mental health in this population is discussed.