Overview of Intellectual/Developmental Disabilities

Diagnostic Manual–Intellectual Disability: A Textbook of Diagnosis of Mental Disorders in Persons With Intellectual Disability, by R. Fletcher, E. Loschen, C. Stavrakaki, and M. First

1. Chris Plauche Johnson, MEd, MD* 2. William Otis Walker Jr, MD† 1. *Professor, Department of Pediatrics, University of Texas Health Science Center at San Antonio, San Antonio, Tex 2. †Director, Neurodevelopmental/Birth Defects Clinics, Children’s Hospital & Regional Medical Center. The University of Washington, Seattle, Wash After completing this article, readers should be able to: 1. List key components of the special education system that benefit children who have mental retardation (MR). 2. Describe associated conditions that commonly occur in children who have MR. 3. Recognize the importance of family supports, including support of siblings, in the management of children who have MR. 4. Discuss the most likely adult outcomes for persons who have various levels of MR. 5. Delineate the factors, in addition to cognitive skills, that help determine long-term outcomes of persons who have MR. 6. Know when it is appropriate to pursue guardianship proceedings for an adult who is mentally retarded. Management of mental retardation (MR) begins with breaking the news to parents of affected children sensitively, compassionately, and culturally appropriately. It is important to emphasize the child’s strengths in addition to describing the delays or deficits. It also is important to be realistic without taking away hope. If the child is younger than 6 years of age at the time of diagnosis, it may be more appropriate to use the term “global developmental delay” unless the delays are due to a recognizable syndrome known to be associated with MR. When the child enters elementary school and standardized testing provides more reliable and predictive results of adult cognitive impairment, the diagnosis may be revised to “mental retardation.” Parents should be informed that the child will continue to progress, albeit more slowly, than his or her peers. Families need additional patience and persistence when raising a child who has MR. Unlike typically developing children, who seem to learn skills simply by modeling their parents, siblings, and peers, children who have MR may need specific instruction to master a skill. If the global developmental delay or MR is due to a known syndrome, appropriate genetic counseling and up-to-date literature should be …

Challenging behaviours such as self-injury and aggression are prevalent among individuals with intellectual disability (ID), significantly impacting quality of life. Cardiofaciocutaneous syndrome (CFCS), a rare multisystem genetic disorder caused by variants in the BRAF, MAP2K1, MAP2K2, or KRAS genes, commonly presents with ID and other neurobehavioural features. To inform effective clinical management, we aimed to characterise and quantify challenging and repetitive behaviours in CFCS, identify functions that may maintain the behaviours, and examine associations with genotype and neurological comorbidities. In this cross-sectional cohort study, caregivers of 61 individuals with CFCS (mean age = 14.2 years; 61% female) completed an electronic survey to capture information regarding demographics, adaptive skills, and neurological history. Genotype was determined from molecular genetic testing results. The frequency, severity, topography, and function of challenging behaviours were assessed with behaviour questionnaires validated for children and adults with developmental disabilities. We evaluated trends using descriptive analyses and examined mean differences across age, genotype, and neurological variables. The cohort consisted primarily of individuals with BRAF variants (62%), followed by MAP2K1 (28%) and MAP2K2 (10%) variants. Prevalence of challenging behaviour was high (77%), and self-injurious and aggressive behaviours were most frequent and severe among adolescents with CFCS relative to younger children or adults. Escape (seeking to avoid an unwanted situation or task) was the most endorsed behavioural function to maintain self-injurious and aggressive/destructive behaviours. BRAF gene variants were associated with the most frequent and variable challenging behaviours, followed by MAP2K1, and then MAP2K2. Challenging and repetitive behaviours were most prevalent among individuals with moderate adaptive functioning, clinically significant sleep disturbance, higher levels of pain interference, and more substantial sensory modulation differences. Individuals with epilepsy also exhibited more frequent repetitive and self-injurious behaviours. Caregivers reported a high prevalence of challenging behaviours among individuals with CFCS, especially in late childhood and adolescence. Therapeutic approaches to address challenging behaviours are needed to optimally support individuals with CFCS and their caregivers.

Previous analyses demonstrated an elevated occurrence of perceived unmet need for mental health care among persons with co-occurring mental and substance use disorders in comparison with those with either disorder. This study built on previous work to examine these associations and underlying reasons in more detail. Secondary data analyses were performed on a subset of respondents to the 2002 Canadian Community Health Survey (unweighted N=4,052). Diagnostic algorithms classified respondents by past-year substance dependence and selected mood and anxiety disorders. Logistic regressions examined the associations between diagnoses and unmet need in the previous year, accounting for recent service use and potential predisposing, enabling, and need factors often associated with help seeking. Self-reported reasons underlying unmet need were also tabulated across diagnostic groups. Of persons with a disorder, 22% reported a 12-month unmet need for care. With controls for service use and other potential confounders, the odds of unmet need were significantly elevated among persons with co-occurring disorders (adjusted odds ratio=3.25; 95% confidence interval=1.96-5.37). Most commonly, the underlying reason involved a preference to self-manage symptoms or not getting around to seeking care, with some variation by diagnosis. The findings highlight potential problems for individuals with mental and substance use disorders in accessing services. The elevated occurrence of perceived unmet need appeared to be relatively less affected by contact with the health care system than by generalized distress and problem severity. Issues such as stigma, motivation, and satisfaction with past services may influence help-seeking patterns and perceptions of unmet need and should be examined in future work.

Introduction Knowledge continues to increase about psychiatric disorders in people with intellectual disabilities (ID). The overwhelming bulk of the research activity has concentrated on those individuals with mild ID. Yet even though people with severe (and profound) ID make up less than 10% of the total ID population (Fryers and Russell, 2004), they provide a disproportionate amount of referrals to specialist ID services (Day, 1985). The major reason for referral of those with more severe ID is for problem (or ‘challenging’) behaviours, such as aggressive, self-injurious and destructive behaviours. They tend to have more frequent and more severe challenging behaviours compared with those with milder ID (Emerson and Bromley, 1995; Jacobsen, 1982). It has long been established that there are multiple factors associated with these behaviours (McClintock et al ., 2003). These include physical health problems, epilepsy, behavioural phenotypes, and communication and sensory difficulties. Some challenging behaviours may also be developmentally appropriate behaviours in a person with more severe ID. In some people with more severe ID, challenging behaviours can be associated with psychiatric symptoms and disorders. Many clinicians have suggested that some of these behaviours may be either caused or exacerbated by the coexisting psychiatric disorders. If this hypothesis is supported then improved detection (and treatment) of the associated psychiatric disorders may potentially reduce both the human suffering and the economic burden that challenging behaviours cause. However, the inter-relationships between challenging behaviours and psychiatric symptoms have until recently remained a relatively neglected area of research.

Patients with both mental illness and substance abuse pose a major clinical challenge to mental health and substance abuse clinicians. The literature seems to support the hypothesis that mental illness and substance abuse occur together more frequently than chance would predict. Assessment and classification of these patients should be guided by clinicians' needs to make meaningful therapeutic judgments and to communicate effectively with each other in coordinating treatment. Different phases of treatment require different approaches to assessment and classification. In initial classification, the clinician should recognize the problem of dual diagnosis and resist premature assumptions about which diagnosis is primary. Long-term treatment and rehabilitation may require systematic evaluation of alternative clinical by potbeses about why a patient exhibits both disorders. This approach eventually may lead to better ways to assess, classify, and treat these difficult patients.

1. Ximena Sanchez-Samper, MD* 2. John R. Knight, MD* 1. *Center for Adolescent Substance Abuse Research, Children's Hospital Boston, Boston, Mass After completing this article, readers should be able to: 1. Discuss current trends in adolescent substance use and the specific substances used most commonly among 8th, 10th, and 12th graders. 2. Identify risk and protective factors, including genetic and environmental correlates, for the initiation of substance use in adolescents. 3. Discuss the most common concomitant mental health disorders and how they can affect the course of diagnosis and treatment for substance abuse. 4. Delineate the variety of treatment options available. 5. Describe the role of the pediatrician in educating patients and families on substance abuse prevention; performing screening and initial assessments; and providing support, brief counseling, or referrals for in-depth treatment. Adolescence is a time of physical, emotional, and psychological maturation as well as a period of searching for independence and experimentation. One area of experimentation associated with adolescence is substance use. (1) Although many adolescents experiment with drugs and alcohol from time to time without enduring problems, those who develop the disorders of substance abuse and dependence make substance use a major public health concern. The Monitoring the Future Study (MTFS) is a nationwide survey measuring smoking, drinking, and illicit drug use among nearly 50,000 8th, 10th, and 12th graders in more than 400 secondary schools in the United States each year. (2)(3) According to the 2006 overview of findings from the MTFS, approximately one fifth (21%) of today's 8th graders, more than one third (36%) of 10th graders, and nearly half (48%) of all 12th graders reported using an illicit drug at least once during their lifetimes. Despite a minimum legal age requirement to purchase alcohol, 6% of 8th graders, 19% of the 10th graders, and 30% of the 12th graders self-reported drunkenness during the month prior to being interviewed. (2)(3) Among the problems experienced by adolescents who use alcohol and drugs are …

Economic Grand Rounds: Types of Practitioners and Outpatient Visits in a Private Managed Behavioral Health Plan

ABSTRACTIntroduction: Current research findings in the field of intellectual disabilities (ID) regarding the relationship between mental health problems and challenging behavior are inconclusive and/or contradictory. The aim of this study was to further investigate the putative association between these two highly prevalent phenomena in people with ID, and specifically to explore the hypothesis that challenging behaviors may be behavioral equivalents of mental health problems. Methods: A sample of 160 adults accessing secondary care ID health services was assessed using five validated measures. These included ratings of severity of disability, mental health problems, autism behaviors, physical health problems, and four different aspects of challenging behavior. In conjunction with demographic information, four multiple regression analyses were undertaken to examine the interaction between mental health problems (moderated by severity of disability) and ratings of overall challenging behavior, aggression, self-injurious behavior, and stereotypy. In each case, age, gender, autism, and physical health problems were included as covariates. Results: There was a statistically significant association between mental health problems and ratings of overall challenging behavior, as well as the moderating effect of severity of disability. Importantly, the positive association between mental health problems and challenging behavior was only significant at more severe levels of disability. Conclusions: These findings support the “behavioral equivalents” hypothesis for mental health problems and challenging behaviors. However, further longitudinal research is required before this hypothesis can be considered unequivocally supported.

Parole Revocation Among Prison Inmates With Psychiatric and Substance Use Disorders

Children with medical and psychiatric disorders often require acute hospital care. This study aimed to investigate 10-year trends in the hospitalization of adolescents with psychiatric diagnoses and examine how these trends vary according to the comorbidity status of psychiatric and medical disorders in acute care settings. We conducted a retrospective, longitudinal cohort analysis of a Japanese nationwide database of acute care hospitalizations that included data from 1763 hospitals for patients aged 6 through 24years from 2010 to 2019. Multivariate Poisson regression with robust variance estimation using cluster robust inference was conducted to assess time trends in hospitalizations with psychiatric disorders in the 3 comorbid groups (psychiatric disorders without medical diagnoses, psychiatric disorders with medical disorders, and medical disorders with comorbid psychiatric disorders). Hospitalizations with psychiatric disorders increased from 4.7% to 6.3% between 2010 and 2019 (cumulative percentage growth: 34.1% [95% CI 33.1%-36.9%]). The largest increase was in the medical disorders with comorbid psychiatric disorders group (cumulative percentage growth: 38.1%). Multivariate analysis also showed an increase in hospitalizations with psychiatric disorders (annual percentage change: 3.1%; 95% CI 2.3%-3.9%). The most common psychiatric disorders were anxiety disorders, eating disorders, and autism spectrum disorders. Attention deficit hyperactive disorder increased during the study period in all comorbidity groups. We found that hospitalizations with psychiatric disorders increased by 34.1% from 2010 to 2019, particularly in the comorbid medical disorders with psychiatric disorders group. These findings suggest that health care systems for pediatric hospitalization require multidisciplinary medical and psychiatric services in acute care hospitals.

Continuing Care After Inpatient Psychiatric Treatment for Patients With Psychiatric and Substance Use Disorders

Substance Abuse-Related Mortality Among Middle-Aged Male VA Psychiatric Patients

Psychopharmacological Treatment of Prader-Willi Syndrome

Protocol for a Systematic Review: Self‐Management Interventions for Reducing Challenging Behaviors among School‐age Students: A Systematic Review