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Resource utilization by children with developmental disabilities in Kenya: discrepancy analysis of parents' expectation-to-importance appraisals.

The purpose of this study was to describe parental perceptions of eight physical and human resources available to meet the needs of children with developmental disabilities in Kenya. Specifically, the study assessed the discrepancy between the importance parents attached to specified resources and the expected use of those resources by their children with developmental disabilities. Discrepancy analysis was conducted on parents' expectation-to-importance appraisals of eight resources identified in previous research including, health, education, friendships, husband/wife, religious organization, community membership/acceptance, employment/work, and home. Overall, parental appraisal of likely access-to-importance was significantly related across all eight physical and human resource areas. Discrepancy scores ranged from negative, through zero, to positive, categorized underutilized, congruent, and over-utilized, respectively. Chi-square analyses were non-significant for gender across all resources with only slight gender differences noted on three resources. Most parents reported a match between expected use and importance in five of the eight community resources, health (57.4%), friends (54.6%), religious affiliation (59.8%), acceptance in the community (60.3%), and having one's own home (62.6%). However, "husband/wife" fell outside the congruent range (50.4%), with slight gender differences noted. Finally, two resource areas where the majority of parents reported noncongruence were educational programs and employment/career service.

Child↗

Descriptive analysis of epileptic seizures and problem behavior in adults with developmental disabilities.

We studied possible relations between seizures and problem behavior in 3 adults with developmental disabilities. Each person was observed for between 56 and 92 days to record occurrences of seizures and problem behavior. Results of our descriptive analysis indicated an association between seizures and problem behavior for each participant. For Stan, most problem behavior occurred following absence seizures. For Tom, problem behaviors only occurred before tonic-clonic seizures but showed no relation to absence seizures. For Mick, problem behaviors began before absence seizures, but no consistent relation was established between problem behavior and tonic-clonic seizures. Findings suggest that seizures and problem behaviors can be associated, but these patterns appear to be highly idiosyncratic across individuals.

Adult↗

Regulatory issues in the management of developmentally disabled patients.

Superimposed on the interplay of assessment and surgical and pharmacological treatment of epilepsy-intertwined with behavioral, psychiatric, and neurological conditions-are the fiduciary responsibilities and regulatory supervision necessary to protect the rights of developmentally disabled patients. Federal law, state regulations, interpretative material, and legal precedents contribute to a cumbersome, confusing, and frequently demoralizing guide to psychiatric care of mentally ill and developmentally disabled individuals. The Code of Federal Regulation governs people living in long-term residential facilities. Using examples from Wisconsin law, clinical and legal concepts are illustrated. Annual seizure graphs are used for frequent monitoring, better trend analysis, and reduced polypharmacy. An experienced board-certified psychiatrist ensures that an initial comprehensive psychiatric assessment, diagnosis, treatment plan, and quarterly treatment plan update-essential items for the Department of Justice's CRIPA review-are conducted. Most states have legislation designed to provide guidelines for the use of psychotropic medications to minimize abuse.

Journal Article↗

Emotional responsivity in children with autism, children with other developmental disabilities, and children with typical development.

Twenty six children with autism, 24 children with developmental disabilities, and 15 typically developing children participated in tasks in which an adult displayed emotions. Child focus of attention, change in facial tone (i.e., hedonic tone), and latency to changes in tone were measured and summary scores of emotional contagion were created. Group differences existed in the ratio of episodes that resulted in emotional contagion. Correlations existed between measures of emotional contagion, measures of joint attention, and indices of severity of autism. Children with autism demonstrated muted changes in affect, but these responses occurred much less frequently than in comparison groups. The findings suggest directions for early identification and early treatment of autism.

Affect↗

Metabolic effects associated with atypical antipsychotic treatment in the developmentally disabled.

OBJECTIVE: Atypical antipsychotics, especially clozapine and olanzapine, have been increasingly associated with weight gain and other adverse metabolic events (diabetes mellitus, hyperlipidemia) in non-mentally retarded populations. This report explores the incidence of this phenomenon in an institution-dwelling population of individuals with developmental disabilities. METHOD: A retrospective longitudinal analysis was performed for a sample of 41 adults with developmental disabilities and comorbid psychiatric and/or behavioral syndromes for whom treatment was converted from typical antipsychotics to olanzapine or risperidone for a minimum period of 2 years. Data were collected from October 1998 to September 2002. Among parameters analyzed were chlorpromazine equivalent dosage of antipsychotic, metabolic parameters, body mass index (BMI), level of concurrent medications, and concomitant dietary restrictions. RESULTS: Thirty-two study subjects (78.0%) were men. The mean age of the study subjects was 43.6 years (at the end of the study). Thirty-seven (90.2%) had severe-to-profound mental retardation. Eight (19.5%) were on a restricted diet. Twenty-three subjects (56.1%) were switched from a typical antipsychotic to olanzapine, and 18 subjects (43.9%) were switched from a typical antipsychotic to risperidone. Of the subsample of subjects who were switched from a typical antipsychotic to risperidone, 12 (66.7%) went on to be switched to olanzapine because of either emergent side effects or lack of efficacy. For the overall sample (N = 41), there was a 19.3% increase in chlorpromazine-equivalent antipsychotic dosage from baseline to the 2-year endpoint along with a 5.6% decrease in fasting blood glucose from baseline to the 2-year endpoint. There were no significant differences between baseline and endpoint values for BMI, total cholesterol, low-density lipoprotein cholesterol, or triglycerides. CONCLUSION: The findings of this 2-year evaluation suggest that clinically or statistically significant BMI increases as well as blood glucose and lipid elevations are not unavoidably correlated with the use of the atypical antipsychotic agents olanzapine and risperi-done and may be minimized by careful monitoring, a regimen of dietary control, and a moderate activity level in a residential population of individuals with mental retardation.

Adult↗

Nonstandard therapies in the developmental disabilities.

The complexity of management issues with regard to developmentally disabled children has led to a broad acceptance of a number of therapeutic approaches that purport to be effective for a wide range of problems. These are generally empiric in origin, and the efficacy of most of them cannot be supported by controlled research studies. In addition, there has been little or no investigation of potential or actual side effects. Acceptance of new therapies and validation of older approaches need to be based on appropriately designed, controlled studies.

Adolescent↗

The contribution of novel brain imaging techniques to understanding the neurobiology of mental retardation and developmental disabilities.

Studying the biological mechanisms underlying mental retardation and developmental disabilities (MR/DD) is a very complex task. This is due to the wide heterogeneity of etiologies and pathways that lead to MR/DD. Breakthroughs in genetics and molecular biology and the development of sophisticated brain imaging techniques during the last decades have facilitated the emergence of a field called Behavioral Neurogenetics. Behavioral Neurogenetics focuses on studying genetic diseases with known etiologies that are manifested by unique cognitive and behavioral phenotypes. In this review, we describe the principles of magnetic resonance imaging (MRI) techniques, including structural MRI, functional MRI, and diffusion tensor imaging (DTI), and how they are implemented in the study of Williams (WS), velocardiofacial (VCFS), and fragile X (FXS) syndromes. From WS we learn that dorsal stream abnormalities can be associated with visuospatial deficits; VCFS is a model for exploring the molecular and brain pathways that lead to psychiatric disorders for which subjects with MR/DD are at increased risk; and finally, findings from multimodal imaging techniques show that aberrant frontal-striatal connections are implicated in the executive function and attentional deficits of subjects with FXS. By deciphering the molecular pathways and brain structure and function associated with cognitive deficits, we will gain a better understanding of the pathophysiology of MR/DD, which will eventually make possible more specific treatments for this population.

Brain↗

Prader-Willi syndrome and psychotic symptoms: 2. A preliminary study of prevalence using the Psychopathology Assessment Schedule for Adults with Developmental Disability checklist.

The Psychopathology Assessment Schedule for Adults with Developmental Disability (PAS-ADD) checklist was used to screen for psychotic symptoms among people with Prader-Willi syndrome (PWS) aged 16 years and over. The scoring instructions for the PAS-ADD checklist were modified to take account of knowledge about the behavioural phenotype of PWS. Using modified scoring, 6.3% of the 95 people for whom checklists were completed had a possible psychotic disorder in the month before the assessment was made. The results should be treated as a crude estimate of the prevalence of psychotic symptoms associated with PWS in adult life in view of potential biases in the sample reported. These findings lend some support to the hypothesis that PWS has a non-chance association with psychotic symptoms and that the association is not entirely accounted for by the increased prevalence of psychosis associated with intellectual disability.

Adolescent↗

Lack of an effect of valproate concentration on lamotrigine pharmacokinetics in developmentally disabled patients with epilepsy.

PURPOSE: to describe the population pharmacokinetics of lamotrigine (LTG) in developmentally disabled (DD) patients with epilepsy and (2) to determine if there is an effect of valproate (VPA) concentration on the extent of the pharmacokinetic interaction between VPA and LTG. METHOD: a NONMEM population analysis of steady-state LTG serum concentrations was conducted in patients receiving LTG either as mono or polytherapy with either an enzyme inducer (IND)-carbamazepine (CBZ), phenytoin (PHT), phenobarbital (PB) or an inhibitor (VPA). RESULTS: sixty-two patients (33.6+/-11.3 years, 47+/-9.9 kg) receiving LTG monotherapy (n=19) or polytherapy with VPA (n=15), inducer(s) (n=32) or both (n=5) were evaluated. LTG dose of 369+/-236 mg per day (8.1+/-5.9 mg/kg per day) achieved LTG plasma concentrations of 6.8+/-3.3 microg/ml. The observed LTG monotherapy, LTG+IND, and LTG+VPA oral clearance (Cl/F) were 0. 69+/-0.2, 1.60+/-0.65 and 0.2+/-0.05 ml/kg per min, respectively. The final LTG Cl/F model was dependent on body weight, concomitant VPA, and either single or multiple inducers. Including the serum concentrations of CBZ, PHT, or VPA in the model, did not significantly improve estimates of Cl/F. CONCLUSION: LTG Cl/F in DD patients is similar to literature values for ambulatory adult patients; however, low weight adult patients have higher elimination rates, as well as an increased response to enzyme induction. VPA inhibition of LTG Cl/F is maximal within the usually accepted therapeutic range for VPA.

Adolescent↗

Age of presentation in developmental disability.

It has not been determined whether severity of handicap or other associated factors are more important in determining the age of presentation for developmental disabilities. The relationship between age at presentation and referral source, presenting complaint, diagnosis, and associated factors (medical illness, motor signs, or behavioral disturbances) was examined in 738 consecutive children referred for developmental evaluation during 1982-1983. The nature of the complaint or diagnosis (motor, language, behavioral, or educational) was a far better predictor of age of presentation than the severity of the disorder. The degree of mental retardation did not affect age of presentation. Behavior problems did not affect the age of presentation for school failure or learning disability, but were associated with later presentation for motor delay, language delay, communication disorder, and within all IQ groups. The association of topography of handicap rather than severity with age of presentation should be considered when establishing or evaluating efforts at early identification of developmental disability.

Black or African American↗

Early identification of children with developmental disabilities.

This paper provides an overview of research into early identification of children with developmental disabilities in child healthcare, especially those disabilities related to cognitive impairment. The review covers the following related topics: definition of the target group, the predictive value of developmental screening instruments and psychomotor tests, risk indexes, early intervention and evaluation of developmental screening programmes. Empirical research into child development and the predictive value of developmental tests is extensive. However, proportionally few, mostly cohort or case-control, studies focusing on evaluation of developmental screening programmes conducted within a clinical setting were found. Some sensitivity and most specificity rates reported fell within what is considered acceptable for developmental screening performed in the pre-school years, i.e. a sensitivity of more than 70% and a specificity between 70% and 80%. Overall, between 1-6% of the children screened were identified. Typically, most children with severe disabilities were identified prior to the screening or excluded from the studies reviewed. The shortcomings of developmental screening (instruments) and difficulties in early identification are discussed.

Age Factors↗

An outbreak of noninvasive group A streptococcal disease in a facility for the developmentally disabled.

BACKGROUND: Reports of outbreaks of group A streptococcal disease in long-term care facilities are uncommon. METHODS: An outbreak of noninvasive group A streptococcal disease was investigated in a large facility for the developmentally disabled. The antistreptolysin O test was used to supplement the case finding. RESULTS: Sixty-seven cases of streptococcal pharyngitis were diagnosed among residents and staff of the facility. Interventions based on enhanced infection control practices were effective, but maintaining them for several months was challenging because of the large number of staff, cognitive deficits of the residents, inconveniently placed areas for hand sanitation for the staff, and occurrence of a simultaneous outbreak of impetigo in the same population. After 4 months, the outbreak was successfully managed without chemoprophylaxis of the entire residential population and staff. CONCLUSION: Outbreaks of group A streptococcal disease in centers for persons with developmental disabilities have unique challenges superimposed on routine outbreak response measures.

Anti-Bacterial Agents↗

A staff manual to help developmentally disabled persons improve their work habits and productivity.

In keeping with new directions for Behavior Modification, this article presents a treatment manual that has evolved over the past dozen or so years from our research program on vocational habilitation with developmentally disabled persons. The manual presents staff-managed and self-management strategies for helping these people improve work habits and productivity in various settings. The manual was written for front-line staff working with developmentally disabled clients. Strategies are presented as a checklist, making it easy to select the most appropriate components for each client and work setting. The guidelines are supported by research. The manual has been used in numerous training seminars, and feedback has been positive. In a workshop at the 1990 Conference of the Florida Association for Behavior Analysis, for example, mean rating of the manual by participants was 4.5 on a 5-point scale.

Humans↗

Psychopharmacology in children with developmental disabilities.

A variety of motor and behavioral symptoms may cause functional impairment in children with developmental disabilities. Some of these symptoms, including increased tone, involuntary movements, and disruptive behaviors, may be helped by multimodal treatments that include pharmacotherapy. Treatment with psychopharmacologic agents can also cause unwanted CNS side effects that can be as detrimental as the target symptom, however. Identification and measurement of target symptoms at baseline and maintenance drug conditions, in conjunction with careful medical monitoring, provide the pediatrician and family with the information needed to make decisions about drug treatment.

Attention Deficit Disorder with Hyperactivity↗

Mortality of persons with developmental disabilities after transfer into community care: a 1996 update.

More than 2,000 persons with developmental disabilities have recently been transferred from California institutions into community care. Using data on 1,878 clients moved between April 1993 and December 1995, Strauss et al. (1998) found a corresponding increase in mortality rates. In the present report we update that study by analyzing 1996 data. There were 36 deaths, an 88% increase in risk-adjusted mortality over that expected in institutions, p < .01. We again found that persons transferred later were at higher risk than those moving earlier, even after adjustment for differences in risk profiles. In the highest functioning group, the community mortality rate was tripled. Death certificate information was also analyzed.

California↗

Correlations between kinematic and rating scale measures of tardive dyskinesia in a developmentally disabled population.

This paper reports a study that examines the relations between Dyskinesia Identification System: Condensed User Scale (DISCUS) scores and a battery of postural and movement kinematic measures in a group of adults diagnosed as being developmentally disabled and screened as having tardive dyskinesia. The results showed that finger tremor measures correlated with the tongue tremor and pill rolling items of DISCUS, whereas the postural stability scores correlated with the toe movement item of DISCUS and the total DISCUS score. There was also a high stability in subject kinematic performance from trial to trial over the postural and movement tests. The pattern of correlations between the DISCUS items and movement kinematic measures is consistent with the proposition that tremor is a centrally rather than peripherally driven phenomenon, although many factors contribute to emergent tremors. These findings provide construct and content validity for the DISCUS as a screening device for tardive dyskinesia and suggest that certain posture and movement kinematic measures could be sensitive measuring methods for tardive dyskinesia in developmentally disabled populations.

Adult↗