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PubMed2005

Placebo effects in developmental disabilities: implications for research and practice.

Recent clinical trials of secretin in children with autism showed robust placebo effects and no benefit of secretin over placebo. This article explores the reasons for the observed placebo effects, focusing on the heightening of positive expectancy by media attention and by the sensory experiences associated with intravenous injections. Comparisons are drawn with research involving other novel treatments and other clinical populations of children with developmental disabilities and neurobehavioral disorders. Research regarding mechanisms of placebo effects is reviewed, including patient and clinician attributes, expectancy effects, participation effects, changes in caregiver behavior, and conditioning. New evidence regarding the biological basis of placebo effects is briefly presented. Since placebo effects are ubiquitous and may operate by a variety of mechanisms, research design is critical in designing clinical trials and in evaluating other outcomes research. Measurement issues important for research in developmental disabilities are emphasized. Ethical concerns have been raised regarding the use of placebo in clinical research, but current analysis suggests that placebo controls are necessary and defensible on ethical grounds, if certain conditions are met. The study of placebo effects ("placebology") holds great promise as a new area of research in therapeutics. The author's research in the potential augmentation of stimulant effects in children with attention deficit/hyperactivity disorder (ADHD) by adding placebo in open label is briefly presented. The placebo has always been integral to the practice of medicine, but advances in scientific medicine and medical ethics have diminished the role and use of placebo in practice. An innovative approach to the ethical use of placebo is proposed.

Child↗

PubMed2005

Neurologic and developmental disability at six years of age after extremely preterm birth.

BACKGROUND: Birth before 26 weeks of gestation is associated with a high prevalence of neurologic and developmental disabilities in the infant during the first two years of life. METHODS: We studied at the time of early school age children who had been born at 25 or fewer completed weeks of gestation in the United Kingdom and Ireland in 1995. Each child had been evaluated at 30 months of age. The children underwent standardized cognitive and neurologic assessments at six years of age. Disability was defined as severe (indicating dependence on caregivers), moderate, or mild according to predetermined criteria. RESULTS: Of 308 surviving children, 241 (78 percent) were assessed at a median age of six years and four months; 160 classmates delivered at full term served as a comparison group. Although the use of test reference norms showed that cognitive impairment (defined as results more than 2 SD below the mean) was present in 21 percent of the children born extremely preterm (as compared with 1 percent in the standardized data), this value rose to 41 percent when the results were compared with those for their classmates. The rates of severe, moderate, and mild disability were 22 percent, 24 percent, and 34 percent, respectively; disabling cerebral palsy was present in 30 children (12 percent). Among children with severe disability at 30 months of age, 86 percent still had moderate-to-severe disability at 6 years of age. In contrast, other disabilities at the age of 30 months were poorly predictive of developmental problems at 6 years of age. CONCLUSIONS: Among extremely preterm children, cognitive and neurologic impairment is common at school age. A comparison with their classroom peers indicates a level of impairment that is greater than is recognized with the use of standardized norms.

Case-Control Studies↗

PubMed1997

When people with developmental disabilities present to community practitioners.

This article describes the problems involved in the global medical assessment of persons with developmental disabilities who present with behavioral changes. Solutions offered include anticipating the difficulties in treating this group and taking steps to insure adequate information is provided. Community providers are cautioned against assuming behavioral changes in this population are psychiatric in nature. Case examples illustrate the quality of life improvements that can result from relatively minor medical interventions in persons initially thought to have psychiatric difficulties.

Adult↗

PubMed1983

Preferential looking acuity of pediatric patients with developmental disabilities.

The grating acuity of 181 patients from 6 weeks to 18 years of age who had neurological abnormalities and documented developmental delay was assessed using preferential looking (PL) procedures. PL acuities were estimated by a staircase procedure in 79% of all patients (143 of 181) on the first attempt. PL acuities were poorer than normal on the average in all patient groups, including those without ophthalmological disorders. However, PL acuities varied systematically with the severity of the eye disorder in each category, with two exceptions, high refractive error and nystagmus. Interocular acuity differences were sensitive to such asymmetric eye disorders as strabismic amblyopia and unilateral ocular abnormalities and enabled monitoring of occlusion therapy for these conditions. Many patients who were 'visually inattentive' despite the absence of major ophthalmological abnormalities were testable but had very poor acuity. This study evaluates the clinical applicability of PL procedures for routine assessment of visual acuity in pediatric patients with developmental disabilities.

Adolescent↗

PubMed2005

Healthy behaviors and lifestyles in young adults with a history of developmental disabilities.

OBJECTIVE: Measure select Healthy People 2010 Leading Health Indicators in young adults with and without a history of developmental disabilities (DD) using a population-based cohort. METHODS: Young adults were interviewed to assess the prevalence of seven Leading Health Indicators: physical activity, overweight and obesity, tobacco use, substance abuse, responsible sexual behavior, injury and violence, and access to healthcare. RESULTS: Young adults with a history of DD were less likely to be involved in tobacco use, substance abuse and sexual activity. Areas of concern included below normal Body Mass Index, lack of HIV/AIDS and sex education, preventive healthcare services for women, and victimization. CONCLUSIONS: Despite some healthy lifestyle indicators, health gaps may place young adults with a history of DD at risk for poor health and quality of life.

Adolescent↗

PubMed2006

Computer-based spelling instruction for students with developmental disabilities.

Learning to spell on the computer may lead to functionally useful writing skills. Alan and Suzy, teenagers with developmental disabilities, were already proficient on a variety of naming and matching tasks but had difficulties spelling; Suzy also made errors reading orally. In Experiment 1, computer teaching led to new anagram and written spelling performances. Suzy's reading also improved. On tabletop tasks, Alan and Suzy sorted and retrieved objects to a list they wrote and read aloud. When the tabletop tasks were repeated weeks later, Alan's spelling accuracy declined but Suzy's was nearly perfect. In Experiment 2, using a different and refined teaching format, Alan relearned his old words and Suzy learned to spell new words. Immediately afterwards, and weeks later, both Alan and Suzy performed nearly perfectly on the tabletop matching, sorting, and reading tasks. The results replicate previous research and extend it with a refined package of computer methods that establishes durable and potentially functional writing skills. The possibility that learning to spell also improves oral reading is worthy of further research.

Adolescent↗

PubMed1993

Rehabilitation for developmental disabilities.

This article describes the role of physical and occupational therapists in the rehabilitation of children with a variety of developmental disabilities. Emphasis has been placed on alerting the pediatrician to the types of assessment and treatments provided in order to encourage early referral of clients.

Brain Injuries↗

PubMed2001

Prevention of secondary health conditions in adults with developmental disabilities: a review of the literature.

PURPOSE: To compile empirical findings regarding prevention strategies for secondary conditions experienced by adults with developmental disabilities. METHOD: The PsycLit and PubMed databases were searched for articles addressing the 20 most pervasive secondary conditions and the prevention of secondary conditions in general. RESULTS: Of more than 2000 articles examined, 25 met criteria for inclusion. None could be categorized as a primary approach to prevention, 19 involved secondary and six involved tertiary approaches. The majority included between one and ten participants. Nine studies involved the administration of treatment, three providing certain experiences, two chart review, and 11 a training approach. Injuries due to self-abuse, communication problems, dental hygiene problems, and problems with memory, persistence and mobility were addressed. CONCLUSION: Little is known regarding the prevention of secondary conditions within this population. The authors stress the necessity to focus research efforts on greater understanding of the linkage between disability, rehabilitation and public health models.

Adolescent↗

PubMed1991

Early diagnosis and referral of children with developmental disabilities.

Recent legislation has created a national program for providing early intervention, including identification, remediation and counseling, for children with developmental disabilities. Providing such services requires interaction between early childhood intervention professionals and primary care physicians in an unprecedented manner. Family physicians and other primary care professionals can identify at-risk children at an early stage. The physician's knowledge of the family can be crucial in the successful delivery of high-quality medical care to this population. This article describes a practical, four-stage approach to primary care participation in the identification, referral and follow-up of developmentally delayed and handicapped children.

Child↗

PubMed1997

Reliability of the ICD 10 version of the Psychiatric Assessment Schedule for Adults with Developmental Disability (PAS-ADD).

The Psychiatric Assessment Schedule for Adults with Developmental Disability (PAS-ADD) is a semi-structured clinical interview designed for use with respondents who have learning disability. The first version was based on the Present State Examination. The revised version was derived from the Schedules for Clinical Assessment in Neuropsychiatry (SCAN), and makes ICD 10 diagnoses using the SCAN diagnostic program. This current version has a 4-point scale of severity, compared with the 3-point scale of the first version. It also has a new module relating to psychotic disorders. The sample consisted of 40 individuals representing a spectrum of neurotic, depressive and psychotic disorders. Videotapes of 40 PAS-ADD interviews were re-rated by trained interviewers who had not been involved in the original study in which the videotapes were produced. The mean Kappa across all individual item codes was 0.65, ranging from 0.94 to 0.35. The mean Kappa agreement on item groups was 0.66. Correlation between total symptom scores was 0.74. Agreement on index of definition was Kappa 0.70. We concluded that, agreement was generally lower than for the ICD 9 version. This was probably due mainly to the increase in the severity categories from three to four. However, the new items (most of which related to psychosis) were of comparable reliability to other items.

Adult↗

PubMed1975

Adolescents with developmental disabilities; a survey of their problems and their management.

Adolescents with developmental disabilities deserve the same sophisticated multidisciplinary evaluation which is now available to younger children. Most of these fit into one of four groupslow normal IQ with poor performance because of psychologic problems, true learning disability, neuromuscular disease, or known mental retardation in need of planning for future care. It is important for the physician dealing with these adolescents to recognize and be ready to deal with the high incidence of emotional problems. He must be able to relate to the adolescents as the primary subject, and to arrange special education, vocational evaluation, and legal counseling. The physician must cultivate professional relationships with a wide range of disciplines since his adolescent patient is likely to need a wide variety of services.

Adolescent↗

PubMed1998

L'Arche Daybreak: an example of interfaith ministry among people with developmental disabilities.

Describes pastoral support of a representational Jewish adult with a developmental disability in a predominantly Christian setting, including Bat Mitzvah preparation and celebration, and the resulting growth in self-esteem. Outlines how this undertaking initiates a transformation into interfaith awareness and appreciation in the author and in the surrounding Jewish and Christian communities. Urges recognition of the gift of people with disabilities to bring together others of varied religious traditions in mutual appreciation and friendship.

Adult↗

PubMed2001

Food selectivity and problem behavior in children with developmental disabilities. Analysis and intervention.

Excessive food selectivity typifies some children with developmental disabilities. We conducted functional analyses to determine the controlling variables for problem behavior that accompanied food selectivity and analyzed the role of establishing operations in ameliorating food selectivity. Specifically, we studied the differential effects on intervention efficacy of an individual's having or not having access to preferred food items prior to an intervention that involved the presence versus absence of a positive reinforcement contingency applied to food consumption. Participants displayed significantly more problem behavior during the nonpreferred-foods condition. Participants consumed nonpreferred target food items only when prior access to preferred foods was limited and a positive reinforcement contingency was implemented. Functional analysis suggested that problem behavior was maintained by negative reinforcement. Intervention data suggested that establishing operations increased the efficacy of the contingency-based intervention. The implications of applying this intervention in the community were discussed as were the relative merits of stimulus fading versus escape extinction intervention strategies.

Autistic Disorder↗

PubMed2001

Perspectives of dentists, families, and case managers on dental care for individuals with developmental disabilities in Kansas.

The status of dental care for individuals with developmental disabilities in Kansas was examined. Dentists, family members, and case managers reported general, but partial, satisfaction with the availability, accessibility, appropriateness, and affordability of such care. Reasons for the results and recommendations for further improvement are discussed.

Adolescent↗

PubMed1985

Factors in family decision-making about placement for developmentally disabled individuals.

Variables that affect placement requests by families for their developmentally disabled members were examined. Results reaffirmed the importance of degree of disability, behavior problems, and external stressors for the decision-making process but also demonstrated that previous assumptions concerning their relative importance should be reexamined. Among younger disabled individuals (under 21), behavior problems were most important; for older individuals (over 21), disruption of family relations and perceived burden of care were more important. Different decision-making processes appeared to operate for younger and older disabled individuals. These results highlight the need for better specified theories that can explain placement requests among different types of individuals and families.

Adolescent↗

PubMed1979

Ascorbic acid status of children with developmental disabilities.

Ascorbic acid status of thirty-nine white children with developmental disabilities, ages three to nineteen years, is reported. Mean daily ascorbic acid intakes were calculated from three-day food records. Biochemical assessment consisted of fasting serum levels and a 6-hr. load test. Nine children served as a control group for the load test only. Mean dietary intakes for the vitamin were 204 per cent of the allowance. The mean serum ascorbic acid value was 1.3 mg. per deciliter. Only two children had levels at the unacceptable deficient level. Following load tests, ten children were identified as low excretors (less than 17 per cent), nine were moderate excretors (17 to 23 per cent), and the rest were high excretors (above 23 per cent). All of the normal children were high excretors. Two of three children with low ascorbic acid intakes (below 66 per cent of the recommended allowance) were verified as deficient by their fasting serum levels and urinary recovery after a load.

Adolescent↗

PubMed1994

Long-term morbidity and management strategies of tracheal aspiration in adults with severe developmental disabilities.

The feeding skills and health of 73 adults with severe developmental disabilities who aspirated were examined between 1986 and 1990. Sixty individuals had profound mental retardation (82%) and 48, cerebral palsy (66%). Modified barium swallow studies, esophagrams and gastric follow-throughs were completed on 67 clients (92%). Twenty adults aspirated barium. Aspiration was specific for barium texture in 8 (40%). Mobility, level of mental retardation, or feeding skills did not discriminate those who aspirated. Mealtime respiratory distress (65%) or chronic lung disease (55%), however, were significantly associated with aspiration. More studies are needed on the early identification and management of aspiration.

Adolescent↗

PubMed2004

Economic implications of caregiving at midlife: comparing parents with and without children who have developmental disabilities.

We compared the economic well-being and maternal employment of parents whose children did or did not have developmental disabilities. This prospective study is a secondary analysis of data from the Wisconsin Longitudinal Study, collected when respondents were aged 18, 36, and 53, on average. Although the two groups were similar at age 18, income and savings differed markedly by age 53, but statistically significant differences were not found on other measures. Mothers of children with disabilities were less likely to have job spells lasting more than 5 years and had lower earnings when they were 36 years old. Further, there was a trend for them to be less likely to have full-time jobs as their children grew older.

Adolescent↗