Search results for " Disability"
showing 10 items of 673 documents
Care management in a French cohort with Down syndrome from the AnDDI-Rares/CNSA study.
2021
Down syndrome (DS) is a genetic neurodevelopmental disorder. In individuals with DS, a multidisciplinary approach to care is required to prevent multiple medical complications. The aim of this study was to describe the rehabilitation, medical care, and educational and social support provided to school-aged French DS patients with varying neuropsychological profiles. A mixed study was conducted. Quantitative data were obtained from a French multicentre study that included patients aged 4-20 years with diverse genetic syndromes. Qualitative data were collected by semi-structured face-to-face interviews and focus groups. Ninety-five DS subjects with a mean age of 10.9 years were included. Sixt…
“ALL TERMS HAVE A NEGATIVE APPENDIX” PARENTS OF OFFSPRING WITH INTELLECTUAL DISABILITY (ID) AND THEIR EXPERIENCES WITH NAMING THIS DIAGNOSIS – AN INT…
2013
16 parents with offspring with ID were interviewed, using a guide that asks for their experiences of the naming the ID-diagnosis, of different labels that have been used, of how labels have changed during the last half century, of how they explain label-changes, and of whether some of the explanations might be considered substantial. Generally there is an overlap with findings of similar studies among professionals. However, parents add new nuances and emphasize in a more thorough way the substantiality of two causal explanations of the changes: the impact of ethical training and the influence of users
Covarying patterns of white matter lesions and cortical atrophy predict progression in early MS
2020
ObjectiveWe applied longitudinal 3T MRI and advanced computational models in 2 independent cohorts of patients with early MS to investigate how white matter (WM) lesion distribution and cortical atrophy topographically interrelate and affect functional disability.MethodsClinical disability was measured using the Expanded Disability Status Scale Score at baseline and at 1-year follow-up in a cohort of 119 patients with early relapsing-remitting MS and in a replication cohort of 81 patients. Covarying patterns of cortical atrophy and baseline lesion distribution were extracted by parallel independent component analysis. Predictive power of covarying patterns for disability progression was tes…
Apolipoprotein E genotype does not influence the progression of multiple sclerosis
2003
OBJECTIVE: To investigate the association between apolipoprotein E (APOE) polymorphisms and the progression of MS. METHODS: We investigated 428 subjects affected by clinically defined MS, with a disease duration of at least three years. We collected data concerning the age at onset of MS, clinical type, disease duration and disability according to the expanded disability status scale (EDSS). We also calculated the progression index (PI) to evaluate disease progression. APOE genotyping and the -491 A/T polymorphism of the APOE promoter were determined. RESULTS: No association was observed between the APOE epsilon4 allele and clinical characteristics of our study population. We also investiga…
No evidence of beneficial effects of plasmapheresis in natalizumab-associated PML
2017
Objective:To examine retrospectively the effects of plasmapheresis (PLEX) on the survival and clinical outcomes of patients with multiple sclerosis (MS) and natalizumab (NTZ)–associated progressive multifocal leukoencephalopathy (PML).Methods:The medical literature was searched for the terms natalizumab and progressive multifocal leukoencephalopathy. A total of 193 international and 34 Italian NTZ-PML cases were included. Clinical outcome was determined by comparing the patients' clinical status at PML diagnosis with status after PML resolution. The effects on survival and clinical outcome of PLEX, sex, age, country, pre-PML Expanded Disability Status Scale score, NTZ infusion number, prior…
Deciphering Multiple Sclerosis Progression
2021
Esclerosi múltiple; Neurodegeneració Esclerosis múltiple; Neurodegeneración Multiple sclerosis; Nneurodegeneration Multiple sclerosis (MS) is primarily an inflammatory and degenerative disease of the central nervous system, triggered by unknown environmental factors in patients with predisposing genetic risk profiles. The prevention of neurological disability is one of the essential goals to be achieved in a patient with MS. However, the pathogenic mechanisms driving the progressive phase of the disease remain unknown. It was described that the pathophysiological mechanisms associated with disease progression are present from disease onset. In daily practice, there is a lack of clinical, ra…
Preservation of neuronal function as measured by clinical and MRI endpoints in relapsing-remitting multiple sclerosis: how effective are current trea…
2018
Approved medications for relapsing-remitting multiple sclerosis have shown to be effective in terms of their anti-inflammatory potential. However, it is also crucial to evaluate what long-term effects a patient can expect from current MS drugs in terms of preventing neurodegeneration. Here we aim to provide an overview of the current treatment strategies in MS with a specific focus on potential neuroprotective effects. Areas covered: Randomized, double-blind and placebo or referral-drug controlled phase 2a/b and phase 3 trials were examined; non-blinded phase 4 studies (extension studies) were included to provide long-term data, if not otherwise available. Endpoints considered were expanded…
Oral health-related quality of life after dental treatment in patients with intellectual disability
2020
Background The influence of dental treatment on oral health-related quality of life (OHRQOL) has rarely been evaluated in patients with intellectual disability (ID) through validated questionnaires. The aim of this study was to estimate the changes on OHRQOL in patients with ID after the implementation of an institutional dental treatment program under general anesthesia using the Franciscan Hospital for Children Oral Health-Related Quality of Life questionnaire (FHCOHRQOL-Q). Material and Methods A prospective longitudinal study was conducted on 85 patients (mean age=24.85 years) classified according to DSM-V whose parents/caregivers completed the FHC-OHRQOL-Q. We analyzed the changes in t…
¿Hay diferencias entre las actitudes hacia la conducta sexual que tienen las personas con discapacidad intelectual y las de los profesionales que tra…
2020
Las actitudes hacia la sexualidad constituyen uno de los elementos cognitivo-emocionales más determinantes del funcionamiento sexual. En este sentido, la sexualidad de las personas con discapacidad intelectual (DI) está fuertemente influenciada por diversos mitos, estereotipos y prejuicios que repercuten en la perpetuación de ciertas actitudes negativas que limitan sus vivencias sexuales. El objetivo de este estudio es analizar las actitudes hacia la conducta sexual de las personas con discapacidad intelectual que poseen las propias personas que integran este colectivo y los profesionales que trabajan con ellos. Para ello, se utiliza la Escala de percepción sexual para personas con discapac…
Coping with Burnout Symptoms through Task Significance in Professionals Working with Individuals with Intellectual Disability
2021
ABSTRACT This study examined an intervention that links task significance (one’s job has a positive impact on other people) to burnout symptoms of professionals working in organizations for individuals with intellectual disability. Professionals assigned to the experimental condition participated in teams designed to enhance the positive impact of their work on others (task significance). To do so, teams focused on a task to improve the quality of life of individuals with intellectual disability. Professionals assigned to the control condition did not participate in these teams, and they continued with their usual work. All the participating professionals answered a questionnaire abou…