Brian Freedman

Psychiatric-related emergency department visits among children with an autism spectrum disorder.

Objective This study aimed to examine the prevalence and characteristics of psychiatry-related emergency department (ED) visits among children with an autism spectrum disorder (ASD), including the specific reason for visit, as well as the influence of insurance type. Methods Data used for this cross-sectional, observational study were obtained from the 2008 National Emergency Department Sample, the largest all-payer ED database in the United States. Psychiatry-related visits to the ED among children with ASD were identified using International Classification of Diseases, Ninth Revision, billing codes. A total of 3,974,332 visits (unweighted) were present for youth 3–17 years, of which 13,191 involved a child with ASD. Results Thirteen percent of visits among children with ASD were due to a psychiatric problem, as compared with 2% of all visits by youths without ASD. Results from the multivariate analyses revealed that the likelihood for a psychiatric ED visit was increased 9-fold (odds ratio [OR], 9.13; 95% confidence interval [CI], 8.61–9.70) among pediatric ASD visits, compared with non-ASD visits. Children with ASD who were covered by private insurance, compared with those with medical assistance, were at even greater risk for a psychiatric ED visit (OR, 1.58; 95% CI, 1.53–1.63). Visits among children with ASD were more likely to be due to externalizing (OR, 1.62; 95% CI, 1.44–1.83) and psychotic (OR, 1.93; 95% CI, 1.58–2.35) disorders compared with visits among non-ASD children. Conclusions This study highlights the need for improving community-based psychiatric systems of care for youths with ASD to divert psychiatry-related ED visits, particularly for those children with private insurance.

Health Care Experiences and Perceived Financial Impact Among Families of Children With an Autism Spectrum Disorder

OBJECTIVE The authors compared the health care experiences of families raising a child with autism spectrum disorder (ASD), an intellectual disability disorder (IDD), or attention-deficit hyperactivity disorder (ADHD). METHODS Children with a current diagnosis of ASD (N=3,005), ADHD (N=9,662), or IDD (N=949) were identified in the 2009-2010 National Survey of Children With Special Health Care Needs. Weighted structural equation modeling was used to determine the association between family satisfaction with medical care, timeliness of care, and medical insurance coverage and the impact of the childs condition on the familys financial situation. RESULTS Families of children diagnosed as having ASD comorbid with either ADHD or IDD or comorbid with both conditions reported the highest levels of dissatisfaction across all health care quality variables and experienced the greatest impact on the familys financial situation. CONCLUSIONS The findings underscore the need for comprehensive and accessible health care services for children with ASD, particularly those with comorbid conditions.

Determinants of appointment absenteeism at an outpatient pediatric autism clinic.

Objective: Two widely discussed yet highly understudied factors that obstruct timely diagnosis and intervention among children with an autism spectrum disorder (ASD) are missed scheduled appointments and wait time for outpatient services. Research surrounding outpatient appointment no-show and cancellation rates as well as predictors of such would shed light on the barriers to community-based clinical care. Methods: In this study, data from 8049 children and adolescents (mean = 6.97 years, SD = 4.81) with scheduled appointments at a multidisciplinary pediatric outpatient autism center were examined. A total of 43,504 appointments, scheduled between June 2003 and April 2012, were analyzed. Random and fixed effects multinomial logistic regression models were employed to explore the child-, clinician-, and appointment-related determinants of no-show and cancellation for initial and follow-up appointments. Results: A no-show rate of 9% and 15%, and a cancellation rate of 11% and 10% was observed for initial (n = 8049) and follow-up (n = 35,455) appointments, respectively. Different predictors were found for both no-show and cancellation at the initial and follow-up appointments. In the multivariate analyses, the most consistent and robust predictors of no-show were African-American child race, medical assistance, provider type and appointment type, and evening appointments. For cancellation, these included increased wait time and provider type. Importantly, cancellation and no-show at the initial evaluation increased the risk for these same outcomes at follow-up. Conclusion: As ASD prevalence figures continue to increase in the United States, findings surrounding wait time, appointment absenteeism, and clinical models of care are important to improving public health.

Feasibility of Coping Effectiveness Training for Caregivers of Children with Autism Spectrum Disorder: a Genetic Counseling Intervention

Caregivers of children with autism spectrum disorder (ASD) may find it difficult to feel a sense of control and to cope with the overall physical and emotional demands of caring for their child. While caregivers are able to successfully cope with a high level of stress, there are limits to their resources and abilities to cope over time. Genetic counselors working with affected families may be able to help parents more effectively manage stress related to the disorder. Few short-term interventions have been reported in genetic counseling yet implementation of evidence-based examples may be achievable. This study aimed to assess the feasibility of a coping effectiveness training (CET) intervention designed to enhance coping self-efficacy (CSE) among caregivers of children with ASD, with the eventual goal of translating this intervention into genetic counseling practice. A randomized treatment-control design was used to investigate the feasibility of an intervention using CET among caregivers of children with ASD. The primary outcome was the feasibility of the intervention; the secondary outcome was improvements in CSE in the intervention group as compared to the control group. Caregivers were recruited and randomized into the treatment (n=15) or control (n=13) groups. Of these, 22 completed the study (retention: 78.6%). The intervention was highly feasible; most caregivers found the CET helpful, practical, useful, and relatively easy to attend. The treatment group demonstrated significantly increased CSE from pre-intervention to post-intervention (p=0.02). Between group differences were not significant when comparing the pre-post changes. We provide preliminary evidence that CET may be beneficial to caregivers of children with ASD. The results of this feasibility study support development of a phase II study of this intervention in a larger cohort, aimed to be implemented into a genetic counseling setting.

The Importance of Inclusion for Cardiovascular Health Promotion Programs in Delaware

Individuals with disabilities experience greater rates of cardiovascular disease than individuals without disabilities. This increase can be attributed to decreased levels of physical activity, poor eating habits, and increased levels of diabetes, smoking, and obesity. Individuals with disabilities are often excluded from surveillance, treatment, and prevention efforts. Consequently, there is little known about their participation rates in health promotion and disease prevention programs. The aims of this investigation are (1) to examine time trends in cardiovascular disease and risk factors over a 10-year period by disability status and (2) to assess the inclusiveness of health promotion programs in Delaware. The percentage of individuals with disabilities increased from 18% in 2001 to 28% in 2011. Individuals with disabilities had higher rates of cardiovascular disease (t = 80.45; degrees of freedom [df] = 198; p < .0001) and obesity (body mass index > 30 kg/m2) than individuals without disabilities (t = 33.0; df = 198; p < .0001). They also reported less physical activity (t = 44.21; df = 198; p < .0001) and worse diet quality (t = 4.70; df = 198; p < .0001). There was a consistent lack of information about inclusion and participation of individuals with disabilities in health promotion programs. Making adaptations within cardiovascular disease prevention programs in Delaware is imperative to improving the health of individuals with disabilities. Ensuring cardiovascular disease programs are accessible and provide disability-specific trained staff will reduce barriers to participation so that all individuals can benefit.

Focus on Friendship: Relationships, Inclusion, and Social Well-Being

Friendships are a key to social well-being for people with and without intellectual and developmental disabilities. Having a variety of social relationships is important, yet friendships have a unique role in people’s lives. Studies about the perspectives of people with intellectual and developmental disabilities note the added value they assign to friendship versus familial and other relationships. Unfortunately, people with intellectual and developmental disabilities typically experience less social-connectedness and fewer intimate relationships than peers without disabilities. Aligned with positive psychology and disability studies frameworks, this chapter examines practices that create opportunities for friendship based on a strengths-based perspective, account for individual choice and agency across a range of capabilities, and value disability as a natural part of human diversity.