Significant Physical Disabilities Research Articles

A systematic review of cell therapy modalities and outcomes in cerebral palsy.

Cerebral palsy is widely recognized as a condition that results in significant physical and cognitive disabilities. Interventions aim to improve the quality of life and reduce disability. Despite numerous treatments and significant advancements, cerebral palsy remains incurable due to its diverse origins. This review evaluated clinical trials, studies, and case reports on various cell therapy approaches for cerebral palsy. It assessed the clinical outcomes of applying different cell types, including mesenchymal stem cells, olfactory ensheathing cells, neural stem/progenitor cells, macrophages, and mononuclear cells derived from peripheral blood, cord blood, and bone marrow. In 60 studies involving 1474CP patients, six major adverse events (0.41%) and 485 mild adverse events (32.9%) were reported. Favorable therapeutic effects were observed in 54 out of 60 cell therapy trials, indicating a promising potential for cell treatments in cerebral palsy. Intrathecal MSC and BM-MNC applications revealed therapeutic benefits, with MSC studies being generally safer than other cell therapies. However, MSC and BM-MNC trials have shown inconsistent results, with some demonstrating superior efficacy for certain outcomes. Cell dosage, transplantation route, and frequency of administration can affect the efficacy of these therapies. Our findings highlight the promise of cell therapies for improving cerebral palsy treatment and stress the need for ongoing research to refine treatment protocols and enhance safety. To establish conclusive evidence on the comparative effectiveness of various cell types in treating cerebral palsy, randomized, double-blind clinical trials are essential.

Chronic constipation in people with intellectual disabilities in the community: cross-sectional study.

One-third to half of people with intellectual disabilities suffer from chronic constipation (defined as two or fewer bowel movements weekly or taking regular laxatives three or more times weekly), a cause of significant morbidity and premature mortality. Research on risk factors associated with constipation is limited. To enumerate risk factors associated with constipation in this population. A questionnaire was developed on possible risk factors for constipation. The questionnaire was sent to carers of people with intellectual disabilities on the case-loads of four specialist intellectual disability services in England. Data analysis focused on descriptively summarising responses and comparing those reported with and without constipation. Of the 181 people with intellectual disabilities whose carers returned the questionnaire, 42% reported chronic constipation. Constipation was significantly associated with more severe intellectual disability, dysphagia, cerebral palsy, poor mobility, polypharmacy including antipsychotics and antiseizure medication, and the need for greater toileting support. There were no associations with age or gender. People with intellectual disabilities may be more vulnerable to chronic constipation if they are more severely intellectually disabled. The associations of constipation with dysphagia, cerebral palsy, poor mobility and the need for greater toileting support suggests people with intellectual disabilities with significant physical disabilities are more at risk. People with the above disabilities need closer monitoring of their bowel health. Reducing medication to the minimum necessary may reduce the risk of constipation and is a modifiable risk factor that it is important to monitor. By screening patients using the constipation questionnaire, individualised bowel care plans could be implemented.

Quantitative assessment of spasticity: a narrative review of novel approaches and technologies.

Spasticity is a complex neurological disorder, causing significant physical disabilities and affecting patients' independence and quality of daily lives. Current spasticity assessment methods are questioned for their non-standardized measurement protocols, limited reliabilities, and capabilities in distinguishing neuron or non-neuron factors in upper motor neuron lesion. A series of new approaches are developed for improving the effectiveness of current clinical used spasticity assessment methods with the developing technology in biosensors, robotics, medical imaging, biomechanics, telemedicine, and artificial intelligence. We investigated the reliabilities and effectiveness of current spasticity measures employed in clinical environments and the newly developed approaches, published from 2016 to date, which have the potential to be used in clinical environments. The new spasticity scales, taking advantage of quantified information such as torque, or echo intensity, the velocity-dependent feature and patients' self-reported information, grade spasticity semi-quantitatively, have competitive or better reliability than previous spasticity scales. Medical imaging technologies, including near-infrared spectroscopy, magnetic resonance imaging, ultrasound and thermography, can measure muscle hemodynamics and metabolism, muscle tissue properties, or temperature of tissue. Medical imaging-based methods are feasible to provide quantitative information in assessing and monitoring muscle spasticity. Portable devices, robotic based equipment or myotonometry, using information from angular, inertial, torque or surface EMG sensors, can quantify spasticity with the help of machine learning algorithms. However, spasticity measures using those devices are normally not physiological sound. Repetitive peripheral magnetic stimulation can assess patients with severe spasticity, which lost voluntary contractions. Neuromusculoskeletal modeling evaluates the neural and non-neural properties and may gain insights into the underlying pathology of spasticity muscles. Telemedicine technology enables outpatient spasticity assessment. The newly developed spasticity methods aim to standardize experimental protocols and outcome measures and enable quantified, accurate, and intelligent assessment. However, more work is needed to investigate and improve the effectiveness and accuracy of spasticity assessment.

A retrospective study on acquired demyelinating diseases in children

Background: Acquired demyelinating diseases (ADS) соnstitute а heterogeneous grоuр of central nervous system disorders of autoimmune origin that causes significant physical and cognitive disabilities. Early recognition and prompt management causes significant improvement in acute episodes of demyelinating disorders. Methods: 33 children diagnosed with demyelinating disorders at Lokmanya Tilal municipal medical college and hospital in Mumbai were enrolled. The study was conducted between January 2013 and November 2022. Demographic data, clinical profile, CSF study, serum antibody, radiological findings were collected and results were analyzed. Statistical Data was analysed using statistical software GraphPad in Stat.V3.0. Data were presented in tables and figures whenever needed. P value <0.05 considered as significant. Results: Of 33 patients, 21 (63%) were cases of acute disseminated encephalomyelitis (ADEM), 6 (18.1%) of transverse myelitis (TM), 1 case of ADEM + TM (3%), 3 (9%) of neuromyelitis optica, 1 (3%) of Optic neuritis and 1 (3%) of multiple sclerosis. ADEM patients presented with encephalopathy and multifocal neurological deficits, 40% were MOG positive. Two patients were of multiphasic ADEM. Patients of transverse myelitis had paraparesis or quadriparesis and sensory + bladder involvement. Patients with NMO presented with bilateral visual impairment with limb weakness and bladder involvement. Steroids were the primary treatment, 3 patients (9%) required intravenous immunoglobulin (IVIG) and 1 (3%) patient received plasma exchange therapy. Conclusions: ADEM is the most common ADS. Early diagnosis and management with steroids therapy improves outcome in most of the patients. Non response to steroids warrants second line treatment options like IV Immunoglobulin (IVIG) or Therapeutic plasma exchange.

Does the second ischemic stroke herald a higher proportional risk for cognitive and physical impairment than the first-ever one?

BackgroundPost-stroke cognitive and physical disabilities are common sequelae; however, it seems that the second ischemic stroke carries a higher proportional risk more than expected. In this study, we aimed to study second stroke sequelae over first-ever one with regard to cognition and physical competence. This study was conducted on two groups; the first composed of 40 patients with acute first lifetime ischemic stroke, and the second group composed of 40 acute second lifetime ischemic stroke. The study was done at menoufiya university hospitals from August 2017 to August 2018. Modified Rankin Scale (MRS), National Institute of Health Stroke Scale (NIHSS), and MINI-Cog Score, were performed at onset, 2 weeks and 3 months later. In addition, routine lab and neuro-imaging were also done.ResultsSize of infarction is larger in 2nd group (p < 0.001), MRS, and NIHSS are significantly higher in 2nd group. Also, there are significant differences between baseline, 2 weeks, and 3 months follow-up in MRS and NIHSS. Mini-Cog scale showed significant difference between the two groups in favor of better cognition in the 1st group. Atrial fibrillation (AF), p = 0.012 was a significant risk factor in the 1st group while smoking, p = 0.017 was the significant risk factor in the 2nd group. Large size stroke was found as independent risk factor in the 2nd group (p < 0.001).ConclusionsThere are significant cognitive and physical disabilities in the second recurrent ischemic stroke as compared to the first-ever one, and the second stroke tend to be more dangerous and carry more disability.

MOMC-5. Systems pharmacogenomics identifies novel targets and clinically actionable therapeutics for medulloblastoma

BackgroundMedulloblastoma (MB) is the most common malignant paediatric brain tumour and a leading cause of cancer-related mortality and morbidity. Existing treatment protocols are aggressive in nature resulting in significant neurological, intellectual and physical disabilities for the children undergoing treatment. Clearly, there is an urgent need for improved, targeted therapies that minimize these harmful side effects.MethodsWe identified candidate drugs for MB using a network-based systems-pharmacogenomics approach: based on results from a functional genomics screen, we identified a network of interactions implicated in human MB growth regulation. We then integrated drugs and their known mechanisms of action, along with gene expression data from a large collection of medulloblastoma patients to identify drugs with potential to treat MB.ResultsOur analyses identified drugs targeting CDK4, CDK6, and AURKA as strong candidates for MB; all of these genes are well validated as drug targets in other tumour types. We also identified non-WNT MB as a novel indication for drugs targeting TUBB, CAD, SNRPA, SLC1A5, PTPRS, P4HB and CHEK2. Based upon these analyses we subsequently demonstrated that one of these drugs, the new microtubule stabilizing agent, ixabepilone, blocked tumour growth in vivo in mice bearing Sonic Hedgehog and Group 3 patient-derived xenograft tumours, providing the first demonstration of its efficacy in MB.ConclusionsOur findings confirm that this data-driven systems pharmacogenomics strategy is a powerful approach for the discovery and validation of novel therapeutic candidates relevant to MB treatment, and along with data validating ixabepilone in PDX models of the two most aggressive subtypes of medulloblastoma, we present the network analysis framework as a resource for the field.

Systems pharmacogenomics identifies novel targets and clinically actionable therapeutics for medulloblastoma

BackgroundMedulloblastoma (MB) is the most common malignant paediatric brain tumour and a leading cause of cancer-related mortality and morbidity. Existing treatment protocols are aggressive in nature resulting in significant neurological, intellectual and physical disabilities for the children undergoing treatment. Thus, there is an urgent need for improved, targeted therapies that minimize these harmful side effects.MethodsWe identified candidate drugs for MB using a network-based systems-pharmacogenomics approach: based on results from a functional genomics screen, we identified a network of interactions implicated in human MB growth regulation. We then integrated drugs and their known mechanisms of action, along with gene expression data from a large collection of medulloblastoma patients to identify drugs with potential to treat MB.ResultsOur analyses identified drugs targeting CDK4, CDK6 and AURKA as strong candidates for MB; all of these genes are well validated as drug targets in other tumour types. We also identified non-WNT MB as a novel indication for drugs targeting TUBB, CAD, SNRPA, SLC1A5, PTPRS, P4HB and CHEK2. Based upon these analyses, we subsequently demonstrated that one of these drugs, the new microtubule stabilizing agent, ixabepilone, blocked tumour growth in vivo in mice bearing patient-derived xenograft tumours of the Sonic Hedgehog and Group 3 subtype, providing the first demonstration of its efficacy in MB.ConclusionsOur findings confirm that this data-driven systems pharmacogenomics strategy is a powerful approach for the discovery and validation of novel therapeutic candidates relevant to MB treatment, and along with data validating ixabepilone in PDX models of the two most aggressive subtypes of medulloblastoma, we present the network analysis framework as a resource for the field.

Detection of cerebral reorganization associated with degenerative cervical myelopathy using diffusion spectral imaging (DSI)

Degenerative Cervical Myelopathy (DCM) is a spinal cord disorder that causes significant physical disabilities in older patients. While most DCM research focuses on the spinal cord, widespread reorganization of the brain may occur to compensate for functional impairment. This observational study used diffusion spectrum imaging (DSI) to examine reorganization of cerebral white matter associated with neurological impairment as measured by the modified Japanese Orthopedic Association (mJOA), and severity of neck disability as measured by the Neck Disability Index (NDI) score. A total of 47 patients were included in the cervical spondylosis (CS) cohort: 38 patients with DCM (mean mJOA = 14.6, and mean NDI = 12.0), and 9 neurologically asymptomatic patients with spinal cord compression (mJOA = 18, and mean NDI = 7.0). 28 healthy volunteers (HCs) served as the control group. Lower generalized fractional anisotropy (GFA) was observed throughout much of the brain in patients compared to HCs (p < 0.05). Fiber pathways associated with somatosensory functions, such as the corpus callosum and corona radiata, showed increased quantitative anisotropy (QA) in patients compared to HCs. Correlation analyses further suggested that structural connectivity was enhanced to compensate for neurological dysfunction within sensorimotor regions, where fibers such as the posterior corona radiata had NQA values that were negatively associated with mJOA (p = 0.0020, R2 = 0.2935) and positively associated with NDI score (p = 0.0164, R2 = 0.1889). Altogether, these results suggest that DCM and neurologically asymptomatic spinal cord compression patients tend to have long-term reorganization within the brain, particularly in those regions responsible for the perception and integration of sensory information, motor regulation, and pain modulation.

Mortality prognostication scores do not predict long-term, health-related quality of life after burn: A burn model system national database study

ObjectiveDespite improved mortality rates after burn injury, many patients face significant long-term physical and psychosocial disabilities. We aimed to determine whether commonly used mortality prognostication scores predict long-term, health-related quality of life after burn injury. By doing so, we might add evidence to support goals of care discussions and facilitate shared decision-making efforts in the hours and days after a life-changing injury. MethodsWe used the multicenter National Institute of Disability, Independent Living and Rehabilitation Research Burn Model System database (1994–2019) to analyze SF-12 physical (PCS) and mental component (MCS) scores among survivors one year after major burn injury. Ninety percent of the observations were randomly assigned to a model development dataset. Multilevel, mixed-effects, linear regression models determined the relationship between revised Baux and Ryan Scores and SF-12 measures. Additionally, we tested a model with disaggregated independent and other covariates easily obtained around the time of index admission: age, sex, race, burn size, inhalation injury. Residuals from the remaining 10% of observations in the validation dataset were examined. ResultsThe analysis included 1606 respondents (median age 42 years, IQR 28–53 years; 70% male). Median burn size was 16% TBSA (IQR 6–30) and 13% of respondents sustained inhalation injury. Higher revised Baux and Ryan Scores and age, burn size, and inhalation injury were significantly correlated with lower PCS, but were not correlated with MCS. Female sex, black race, burn size, and inhalation injury correlated with lower MCS. All models poorly explained the variance in SF-12 scores (adjusted r2 0.01–0.12). ConclusionHigher revised Baux and Ryan Scores negatively correlated with long-term physical health, but not mental health, after burn injury. Regardless, the models poorly explained the variance in SF-12 scores one year after injury. More accurate models are needed to predict long-term, health-related quality of life and support shared decision-making during acute burn care.

Barclay, Linda. Disability with Dignity: Justice, Human Rights, and Equal Status. New York: Routledge, 2018. Pp. 142. $124.00 (cloth).

Barclay, Linda. <i>Disability with Dignity: Justice, Human Rights, and Equal Status</i>. New York: Routledge, 2018. Pp. 142. $124.00 (cloth).

Baroreflex Sensitivity in Facioscapulohumeral Muscular Dystrophy

Facioscapulohumeral muscular dystrophy (FSHD), the third most common muscular dystrophy, is caused by a genetic mutation that alters DUX4 gene expression. Although cardiac muscle is known to be spared in people with FSHD, they can develop significant morbidities and physical disabilities because of their reduced mobility. Autonomic dysregulation via heart rate variability has been demonstrated in people with FSHD. It is unknown, however, if baroreflex function, an important regulator of blood pressure, is impaired in people with FSHD.OBJECTIVETo examine if baroreflex sensitivity is impaired in patients with FSHD.METHODSThirty minutes of resting blood pressure, heart rate, and baroreflex sensitivity (via the sequence method) was measured in 7 patients with FSHD (age: 48 ± 8 yrs, avg ± SD) and 7 sex‐ and age‐matched controls (age: 40 ± 7 yrs, p &gt; 0.05).RESULTSPeople with FSHD were less active (FSHD Activity Metabolic Index (AMI): 17.8 ± 23.0 kcal/day; controls AMI: 151 ± 105 kcal/day; p = 0.01), but had a similar body mass index compared to controls (FSHD: 25 ± 4; controls: 26 ± 3; p &gt; 0.05). Baroreflex sensitivity was similar among FSHD participants and controls (FSHD: 12.6 ± 8.3 ms/mmHg; controls: 16.6 ± 9.6 ms/mmHg; p = 0.40). Mean arterial pressure was also similar for FSHD participants compared to controls (FSHD: 95.3 ± 6.1 mmHg; controls: 91.6 ± 8.6 mmHg; p = 0.37). Heart rate was elevated in FSHD participants compared to controls (FSHD: 66.6 ± 7.5 BPM; controls: 56.8 ± 6.2 BPM; p = 0.03).CONCLUSIONSThese findings suggest that baroreflex regulation is not diminished in people with FSHD, but an elevated heart rate may indicate physical deconditioning due to limited mobility.Support or Funding InformationScholarly Inquiry at TJU, Greg Marzolf Jr. Foundation, Friends of FSH Foundation.

Clinical study and management of hydrocephalus in children

Background: Hydrocephalus is a condition in which an accumulation of cerebrospinal fluid (CSF) occurs within the brain. Hydrocephalus can occur at any age, but it is more common in infants. Long-term complications of hydrocephalus can vary widely and are often difficult to predict and may result in significant intellectual, developmental and physical disabilities. Ventriculoperitoneal shunt remains mainstay of treatment even today as it is easily available and inexpensive.Methods: The study was conducted in Dr. V. M. Government Medical College and Hospital located in Solapur (Maharashtra) from September 2016 to 2018. It was a prospective descriptive study. 30 cases up to the age 14 years with diagnosis of hydrocephalus undergoing VP (ventriculo-peritoneal) shunt surgery were included in the study.Results: Aqueductal stenosis and tuberculous meningitis were the commonest causes of congenital and acquired hydrocephalus in children respectively. Shunt infection and shunt obstruction were the commonest post-operative complications required shunt revision. Low birth weight and other associated congenital anomalies increased the mortality rate.Conclusions: VP shunt placement has been the main treatment modality for hydrocephalus. VP shunts procedures are associated with complications and morbidity. Number of revision shunt procedures, low birth weight, associated congenital anomalies adversely affected the final surgical outcome.

Illness-related suffering and need for palliative care in Rohingya refugees and caregivers in Bangladesh: A cross-sectional study.

Despite recognition that palliative care is an essential component of any humanitarian response, serious illness-related suffering continues to be pervasive in these settings. There is very limited evidence about the need for palliative care and symptom relief to guide the implementation of programs to alleviate the burden of serious illness-related suffering in these settings. A basic package of essential medications and supplies can provide pain relief and palliative care; however, the practical availability of these items has not been assessed. This study aimed to describe the illness-related suffering and need for palliative care in Rohingya refugees and caregivers in Bangladesh. Between November 20 and 24, 2017, we conducted a cross-sectional study of individuals with serious health problems (n = 156, 53% male) and caregivers (n = 155, 69% female) living in Rohingya refugee camps in Bangladesh, using convenience sampling to recruit participants at the community level (i.e., going house to house to identify eligible individuals). The serious health problems, recent healthcare experiences, need for medications and medical supplies, and basic needs of participants were explored through interviews with trained Rohingya community members, using an interview guide that had been piloted with Rohingya individuals to ensure it reflected the specificities of their refugee experience and culture. The most common diagnoses were significant physical disabilities (n = 100, 64.1%), treatment-resistant tuberculosis (TB) (n = 32, 20.5%), cancer (n = 15, 9.6%), and HIV infection (n = 3, 1.9%). Many individuals with serious health problems were experiencing significant pain (62%, n = 96), and pain treatments were largely ineffective (70%, n = 58). The average age was 44.8 years (range 2-100 years) for those with serious health problems and 34.9 years (range 8-75 years) for caregivers. Caregivers reported providing an average of 13.8 hours of care per day. Sleep difficulties (87.1%, n = 108), lack of appetite (58.1%, n = 72), and lack of pleasure in life (53.2%, n = 66) were the most commonly reported problems related to the caregiving role. The main limitations of this study were the use of convenience sampling and closed-ended interview questioning. In this study we found that many individuals with serious health problems experienced significant physical, emotional, and social suffering due to a lack of access to pain and symptom relief and other essential components of palliative care. Humanitarian responses should develop and incorporate palliative care and symptom relief strategies that address the needs of all people with serious illness-related suffering and their caregivers.

THE ROLE OF PHYSICAL EDUCATION IN IMPROVING THE HEALTH STATUS OF STUDENTS OF SPECIAL MEDICAL GROUPS

The aim is to carry out the analysis of the disease incidence of students and to scientifically substantiate the directions of improving health and fitness activity in the physical education of the students of special medical groups. Materials and methods: The study was conducted at Zhytomyr National Agroecological University in 1992-2019. The main pedagogical experiment involved 681 students (209 males and 472 females, aged 17-22). The research methods included theoretical methods (the analysis and synthesis of literary sources, the analysis of curricula, the assessment of the quality of classes with the students of special medical groups, the study and analysis of the medical cards of students); empirical methods (pedagogical observations, the methods of mathematical statistics). Results: The study determined that more than 57.6 % students of higher educational establishments of Ukraine had an unsatisfactory level of physical fitness, significant physical disabilities, diseases; from 10.9 to 20.5 % students had an insufficient level of physical fitness and significant health disorders; from 8.1 to 17.4 % students belongedto a special medical group; from 0.4 to 1.2 % students were exempt from sports and had chronic diseases and disabilities. Conclusions: The quality of the physical education process in special medical groups depends on the interconnection of all the components that affect its efficiency, including an outlook, motives, interests, the attitude of students to physical education and health-improving activities; the students' desire to overcome their health disabilities; individualcharacteristics of students; the means, forms, methods, and principles of physical self-improvement; material and technical support of educational and health and fitness events.

The meaning of leisure to children and young people with significant physical disabilities: Implications for optimising participation

Introduction The facilitation of meaningful leisure participation for children and young people requires an understanding of what leisure means to them. This study aimed to understand meaningful leisure from the perspective of children and young people with complex physical and communication disabilities. Method A hermeneutic phenomenological research design was used. Data was gathered through multiple interviews with six young people supported by photo elicitation, Talking Mats and direct observation. Individual case studies were analysed, together with six autobiographies of people with similar disabilities. Data analysis was iterative and multi-directional, alternating between segments and the whole throughout interpretation. Results Leisure experience meanings were uniquely constructed for each person, based on preferences, personality and circumstances. The tree of leisure emerged as a useful metaphor for three essential features (control, engrossing, enjoyment) and four key meanings (escape, exploration, exchange and expression) of leisure. Children and young people experienced five meaningful outcomes that lasted beyond the leisure activity (restoration, protection, construction, reflection and connection). Conclusion For children and young people with disabilities, a balanced array of diverse leisure experiences provides a powerful and accessible route to wellbeing. Implications for practice include understanding the individual, focusing on the social environment, supporting self-advocacy and promoting opportunities for free movement.

Falla renal en el paciente con lesión medular aguda

Las lesiones medulares constituyen un evento catastrófico relacionado con discapacidades físicas significativas y grandesimplicaciones socioeconómicas. Entre sus complicaciones, la insuficiencia renal, se encuentra relacionada con mayor morbilidad y mortalidad. De todos los mecanismos fisiopatológicos propuestos de la enfermedad, destacan el desequilibrio en las funciones reguladoras del sistema nervioso autónomo, el estado inflamatorio sistémico producto de la activación exponencial de las células inflamatorias circulantes, y la rabdomiólisis producto del trauma. Estos cambios fisiológicos que llevan a la insuficiencia renal afectan el metabolismo de diferentes fármacos, en particular de aquellos con eliminación renal. Los componentes intracelulares de la maquinaria inflamatoria, incluidas enzimas y factores de transcripción, también pueden servir como dianas terapéuticas para resolver la inflamación en múltiples órganos posterior a una lesión medular.

Clinical and Radiological Profiles, Treatment, and Outcome of Pediatric Acquired Demyelinating Disorders of Central Nervous System.

Introduction:Demyelinating disorders of central nervous system are rare childhood disorders that cause significant physical and cognitive disabilities. Early diagnosis and appropriate treatment determines prognosis and outcome.Objective:The objective of this work was to study clinical profile, investigative and radiological features, treatment, and outcome of children with demyelinating disorders.Materials and Methods:A retrospective chart review of 32 children with demyelinating disorders admitted in a tertiary-care pediatric hospital from Bangalore between November 2013 and October 2017 was conducted. Sociodemographic data, clinical features, cerebrospinal fluid (CSF) findings, radiological features, treatment received, and outcome were collected and results were analyzed.Results:Among 32 patients of demyelinating disorders, majority were acute disseminated encephalomyelitis (ADEM) (15, 46.9%), followed by transverse myelitis (9, 28.1%), multiple sclerosis (MS) (3, 9.4%), optic neuritis (3, 9.4%), and neuromyelitis optica (NMO) (2, 6.2%). Mean age of presentation was 7.8 years. Among 32 patients, 15 were male (47%). In patients with ADEM, the mean age of presentation was 5.5 years. Two patients had tumefactive ADEM and 10 recovered after steroid therapy. In patients with MS, the mean age of presentation was 10.6 years; one patient died and the condition of two patients improved. In patients with transverse myelitis, the mean age of presentation was 8.9 years and seven patients recovered. In a patient with NMO, CSF was positive for antibody to aquaporin-4. The child improved with steroids and intravenous immunoglobulin. Three patients with optic neuritis were treated with steroids and they recovered.Conclusion:Even though demyelinating disorders are rare in pediatric age group, one should be aware of this entity as early diagnosis and treatment improves outcome. Most common among them is ADEM.

Assessing Preference Using Eye Gaze Technology for Individuals with Significant Intellectual and Physical Disabilities

The purpose of this study was to examine the effectiveness of an eye gaze preference assessment using eye gaze technology to identify reinforcers for three adolescents with severe intellectual and physical disabilities. Preference was measured in a paired-choice preference assessment using eye gaze technology to determine stimulus selection. A subsequent reinforcer assessment using an ABCACB design to test the effects of high- and low-preference stimuli was implemented to determine the accuracy of eye gaze technology in identifying preferences. The results demonstrate that the preference assessment using eye gaze technology was effective in identifying reinforcers for all three participants.

The lived experience: Nurses' experience of caring for patients with a traumatic spinal cord injury

BackgroundNurses are involved in delivering care for patients following acute traumatic spinal cord injury throughout the entire care journey. An injury of this type is significant for the individual and their family and can be challenging for nurses delivering care for patients with life changing injuries, especially for nurses new to this setting. There is a lack of research that examines the experience of nurses caring for these patients in the acute setting. MethodA hermeneutic phenomenological approach was used to understand the experience of nurses caring for patients in the acute setting who had sustained a traumatic spinal injury with associated neurological deficit. Using the phenomenological approach guided by the insight of Gadamer and Max Van Manen, participants with a broad range of experience were recruited and interviewed. The responses were transcribed into a text and subjected to hermeneutic analysis. Burnard's (1991) 14-step process and the hermeneutic approach were used to interpret and understand the phenomenon of interest. ConclusionThe study highlights the experience and challenges of providing care to these individuals. Although patients had significant physical disabilities and were often dependent physically, the nurses' concerns were directed more towards fulfilling their psychological needs. Nurses identified grieving patients and felt their role was to provide realistic hope to motivate them. They felt an internal tension regarding desensitisation towards their patients, but this was often an internal protective mechanism to deal with the significance of the events surrounding these patients. Nurses new to this setting took time to learn the routines and manage the unique challenges effectively. Caring for these patients gave the nurses the opportunity to understand their patients and their families, and appreciate that both groups will fluctuate in their behavior throughout the acute process, as they adjust to grief and loss.

From Access to Communion: Beyond the Social Model

ABSTRACTThe author discusses the public policy implications of current models of disability, arguing that the Americans with Disabilities Act represents the shift from medical to social models and that this shift has resulted in significant progress toward social and economic inclusion for those with disabilities. Yet this vision of society remains incomplete, as the current emphasis on individual accommodation has not led to fundamental social transformation. Drawing on resources in contemporary theologies of disability, the witness of L'Arche, and the author's experience as the parent of a child with significant intellectual and physical disabilities and complex medical needs, the essay calls those with and without disabilities to a life of communion and mutual giving and receiving.