Comprehensive health assessments during de-institutionalization: An observational study

Background: People with intellectual disability (ID) leaving institutions pass through a transition stage that makes them vulnerable to inadequate health care. They enter into community care under general practitioners (GPs) who are often untrained and inexperienced in their needs. Specifically designed health reviews may be of assistance to both them and their new GPs as they go through that phase

Development and Psychometric Properties of an Assessment for Persons With Intellectual Disability—The interRAI ID

This paper describes the development of the interRAI-Intellectual Disability (interRAI ID), a comprehensive instrument that assesses all key domains of interest to service providers relative to a person with an intellectual disability (ID). The authors report on the reliability and validity of embedded scales for cognition, self-care, aggression, and depression. Four provider agencies volunteered to participate and assessed a total of 160 community-dwelling adults with ID using the interRAI ID, Dementia Questionnaire for Persons with Mental Retardation, and Reiss Screen for Maladaptive Behavior. All scales had acceptable levels of internal consistency (Cronbach’s alpha 0.74–0.93) and good relationships with the criterion measures ( r  = 0.50–0.93, p  < 0.0001). The development of the interRAI ID represents an important and successful first step toward an integrated, comprehensive, and standardized assessment of adults with ID. Use of this instrument may lead to more appropriate support planning, enhanced communication between various professionals supporting persons with ID, and a more seamless approach to supports across the health and social service systems.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/75618/1/j.1741-1130.2006.00094.x.pd

Visual impairments in people with severe and profound multiple disabilities: An inventory of visual functioning

Background: The prevalence of visual impairments in people with severe and profound multiple disabilities (SPMD) is the subject of considerable debate and is difficult to assess. Methods: In a typical Dutch care organization, all clients with SPMD (n = 76) participated in the study and specific instruments adapted to these clients (requiring a minimum of cooperation) were used to measure visual acuity, the visual field, binocular vision, contrast sensitivity, refractive errors and visual functioning behaviour. Results: We found an unexpected 92% of clients with SPMD to have visual impairments. Previously, only 30% were known to have visual problems. None of the persons observed had normal visual acuity. Subnormal visual acuity was the best result. The severity of the visual impairment was related to the severity of the intellectual disability. In addition to the problem of acuity, impairments in the visual field, impaired contrast sensibility and impaired binocular functioning were found, as well as impaired visual attention, fixation and following. In 22% of the clients observed, refractive errors were found and glasses were advised. Conclusions: Consequences for caregiving and for modifications of the environment were discussed. © 2006 Blackwell Publishing Ltd

Taxonomy Based on Science Is Necessary for Global Conservation [Formal comment]

Taxonomy is a scientific discipline that has provided the universal naming and classification system of biodiversity for centuries and continues effectively to accommodate new knowledge. A recent publication by Garnett and Christidis expressed concerns regarding the difficulty that taxonomic changes represent for conservation efforts and proposed the establishment of a system to govern taxonomic changes. Their proposal to “restrict the freedom of taxonomic action” through governing subcommittees that would “review taxonomic papers for compliance” and their assertion that “the scientific community\u27s failure to govern taxonomy threatens the effectiveness of global efforts to halt biodiversity loss, damages the credibility of science, and is expensive to society” are flawed in many respects. They also assert that the lack of governance of taxonomy damages conservation efforts, harms the credibility of science, and is costly to society. Despite its fairly recent release, Garnett and Christidis\u27 proposition has already been rejected by a number of colleagues. Herein, we contribute to the conversation between taxonomists and conservation biologists aiming to clarify some misunderstandings and issues in the proposition by Garnett and Christidis. Placing governance over the science of taxonomy blurs the distinction between taxonomy and nomenclature. Garnett and Christidis\u27s proposal is far-reaching but represents a narrow perspective of taxonomy, as utilized by conservation, and reflects an increasingly broad misunderstanding throughout biology of the scientific basis of taxonomy, formalized nomenclature, and the relationship between them. This trend may have resulted from the attenuation of instruction in taxonomic principles and, in particular, nomenclature at many universities, in part because of a shift in research priorities away from taxonomy

Survival analysis of 3 different age groups and prognostic factors among 402 patients with skeletal high-grade osteosarcoma: real world data from a single tertiary sarcoma center

Simple SummaryAge is one of many prognostic factors for overall survival in patients with skeletal osteosarcoma. This retrospective study provides an overview of survival in patients with high-grade osteosarcoma in different age groups. It shows prognostic variables for survival and local control among the overall cohort. In this study, in which 402 patients with skeletal high-grade osteosarcoma were included, poor survival was associated with increasing age. Age groups, tumor size, poor histopathological response, distant metastasis at presentation, and local recurrence were independent prognostic factors associated to overall survival and event-free survival. Differences in outcome among different age groups can be partially explained by patient characteristics and treatment characteristics.Age is a known prognostic factor for many sarcoma subtypes, however in the literature there are limited data on the different risk profiles of different age groups for osteosarcoma survival. This study aims to provide an overview of survival in patients with high-grade osteosarcoma in different age groups and prognostic variables for survival and local control among the entire cohort. In this single center retrospective cohort study, 402 patients with skeletal high-grade osteosarcoma were diagnosed and treated with curative intent between 1978 and 2017 at the Leiden University Medical Center (LUMC). Prognostic factors for survival were analyzed using a Cox proportional hazard model. In this study poor overall survival (OS) and event-free survival (EFS) were associated with increasing age. Age groups, tumor size, poor histopathological response, distant metastasis (DM) at presentation and local recurrence (LR) were important independent prognostic factors influencing OS and EFS. Differences in outcome among different age groups can be partially explained by patient and treatment characteristics.Experimentele farmacotherapi

Lumbar spine and total-body dual-energy X-ray absorptiometry in children with severe neurological impairment and intellectual disability: a pilot study of artefacts and disrupting factors

Background Children with severe neurological impairment and intellectual disability (ID) are susceptible for developing low bone mineral density (BMD) and fractures. BMD is generally measured with dual-energy X-ray absorptiometry (DXA). Objective To describe the occurrence of factors that may influence the feasibility of DXA and the accuracy of DXA outcome in children with severe neurological impairment and ID. Materials and methods Based on literature and expert opinion, a list of disrupting factors was developed. Occurrence of these factors was assessed in 27 children who underwent DXA measurement. Results Disrupting factors that occurred most frequently were movement during measurement (82%), aberrant body composition (67%), small length for age (56%) and scoliosis (37%). The number of disrupting factors per child was mean 5.3 (range 1-8). No correlation was found between DXA outcomes and the number of disrupting factors. Conclusion Factors that may negatively influence the accuracy of DXA outcome are frequently present in children with severe neurological impairment and ID. No systematic deviation of DXA outcome in coherence with the amount of disrupting factors was found, but physicians should be aware of the possible influence of disrupting factors on the accuracy of DXA

A population-based nested case control study on recurrent pneumonias in children with severe generalized cerebral palsy: ethical considerations of the design and representativeness of the study sample

BACKGROUND: In children with severe generalized cerebral palsy, pneumonias are a major health issue. Malnutrition, dysphagia, gastro-oesophageal reflux, impaired respiratory function and constipation are hypothesized risk factors. Still, no data are available on the relative contribution of these possible risk factors in the described population. This paper describes the initiation of a study in 194 children with severe generalized cerebral palsy, on the prevalence and on the impact of these hypothesized risk factors of recurrent pneumonias. METHODS/DESIGN: A nested case-control design with 18 months follow-up was chosen. Dysphagia, respiratory function and constipation will be assessed at baseline, malnutrition and gastro-oesophageal reflux at the end of the follow-up. The study population consists of a representative population sample of children with severe generalized cerebral palsy. Inclusion was done through care-centres in a predefined geographical area and not through hospitals. All measurements will be done on-site which sets high demands on all measurements. If these demands were not met in "gold standard" methods, other methods were chosen. Although the inclusion period was prolonged, the desired sample size of 300 children was not met. With a consent rate of 33%, nearly 10% of all eligible children in The Netherlands are included (n = 194). The study population is subtly different from the non-participants with regard to severity of dysphagia and prevalence rates of pneumonias and gastro-oesophageal reflux. DISCUSSION: Ethical issues complicated the study design. Assessment of malnutrition and gastro-oesophageal reflux at baseline was considered unethical, since these conditions can be easily treated. Therefore, we postponed these diagnostics until the end of the follow-up. In order to include a representative sample, all eligible children in a predefined geographical area had to be contacted. To increase the consent rate, on-site measurements are of first choice, but timely inclusion is jeopardized. The initiation of this first study among children with severe neurological impairment led to specific, unexpected problems. Despite small differences between participants and non-participating children, our sample is as representative as can be expected from any population-based study and will provide important, new information to bring us further towards effective interventions to prevent pneumonias in this population

Symptoms of gastroesophageal reflux disease in severely mentally retarded people: a systematic review

<p>Abstract</p> <p>Background</p> <p>Gastroesophageal reflux disease (GERD) occurs when stomach acid frequently backs up (or refluxes) into the gullet (or esophagus), and it has serious consequences for the quality of life. Usually this is felt as heartburn. Because severely mentally retarded people usually do not utter complaints of heartburn, it requires a high index of suspicion to discover possible GERD. Therefore it is relevant for care professionals such as nurses to have knowledge of those with a higher risk of GERD and of the possible manifestations of GERD.</p> <p>Methods</p> <p>Using a predefined search method, electronic databases were searched for studies relating the presence of symptoms to the presence of GERD. Relevant data were extracted and the methodological quality of the studies assessed. The results of the included studies were synthesized and conclusions about the level of evidence were drawn.</p> <p>Results</p> <p>Nineteen studies were found relating symptoms to the presence of GERD. Only four were of good methodological quality. The studies were very diverse concerning the studied population, the study method, and the kind of symptoms examined. This makes it difficult to synthesize the results of the studies. There is evidence that patients with cerebral palsy, patients using anticonvulsive drugs, and those with an IQ lower than 35 more frequently have GERD. There is also evidence that vomiting, rumination and hematemesis are associated with a higher risk of the presence of GERD, whereas there is no clear scientific evidence that particular behavior symptoms are indicative for GERD.</p> <p>Conclusion</p> <p>The possible manifestations of GERD are many and varied. A guideline will be made for care professionals to aid systematic observation of possible manifestations of GERD.</p

Physical fitness of children and adolescents with moderate to severe intellectual disabilities

Background: Low levels of physical fitness are associated with low physical and mental health. The aims of this study were to assess the health-related physical fitness of children with intellectual disability (ID), and study the association of physical activity and motor development with physical fitness. Methods: One hundred and twenty-eight children with moderate to severe ID (83 boys; age 2–18 years) visiting specialised day programme centres engaged in field-based physical fitness tests (body composition, muscular strength, muscular endurance, and cardiorespiratory fitness). Scores were compared to reference values, and with linear regression analysis the association between the fitness outcomes and physical activity and motor development was studied. Results: High rates of overweight (23–25%) and obesity (10–15%) were found. A majority of the participants (71–91%) scored below reference values for muscular strength, endurance, and cardiorespiratory fitness tests. Physical activity and motor development were positively associated with scores on several fitness test (β = 0.27–0.44; p < 0.05). Conclusions: Children with moderate to severe ID visiting specialised day programme centres have strikingly low physical fitness levels. Policies and interventions to increase the physical fitness for this specific group of children are urgently needed, in which increasing physical activity and motor skills are expected to be effective components