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1.
Epilepsy Behav ; 151: 109646, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38271851

RESUMEN

Epilepsy affects approximately 25 % of people with intellectual disability (ID). Despite this high prevalence, evidence of health disparity exists in healthcare access and health outcomes for this population. Patients with ID experience additional challenges in accessing appropriate epilepsy care, and are at greater risk of experiencing inappropriate prescribing, polypharmacy and misdiagnosis compared with the general population. The expectations, attitudes and actions of physicians are key in addressing health inequalities, particularly those which disproportionately impact a specific group of patients, such as patients with ID and epilepsy. This qualitative study aimed to explore the views of specialist physicians as to why they believe this patient group are at a disadvantage when it comes to accessing appropriate epilepsy care, and how physicians can intervene to ensure that patients with ID are given equal access to suitable epilepsy care, and equal opportunity to achieve the best possible treatment outcomes. Semi-structured interviews were carried out with six physicians, located in six countries, who specialise in the care of persons with ID who have epilepsy. Interviews sought views on prognostic expectations, experiences of disparities in epilepsy care, and suggestions for advocacy interventions. Interviews were analysed using reflexive thematic analysis. Three core themes and nine subthemes were identified. Core themes included (1) 'Nervousness in care and treatment,' which reflected participants' descriptions of a nervousness by colleagues when treating epilepsy in patients with ID. (2) 'Taking a deeper dive' captured the harmful effects of accepting "common dogma," as well as the issue of a lack of clarity around treatment pathways for patients with epilepsy and ID. (3) 'Teach me' illustrated the importance of shared expertise, reflective practice and continued research and advocacy. Findings reflected participants' recommendations to address disparities in epilepsy care for patients with ID. These recommendations highlighted education and training, taking time to learn how to communicate in different ways, and regular reflection on personal assumptions and biases as important contributors to addressing inequalities in epilepsy care for patients with ID. It is hoped that findings will prompt those providing epilepsy care to reflect on their own practice and identify ways in which they might intervene to minimise inadvertent harm and reduce health disparities in epilepsy care for patients with ID.


Asunto(s)
Epilepsia , Discapacidad Intelectual , Humanos , Discapacidad Intelectual/epidemiología , Discapacidad Intelectual/terapia , Rol del Médico , Epilepsia/diagnóstico , Epilepsia/epidemiología , Epilepsia/terapia , Atención a la Salud , Encuestas y Cuestionarios
2.
Eur J Neurol ; 29(7): 1873-1884, 2022 07.
Artículo en Inglés | MEDLINE | ID: mdl-35340074

RESUMEN

BACKGROUND AND PURPOSE: This position paper makes recommendations following an audit of care provided to people presenting with a seizure to emergency departments (EDs) in Europe. METHODS: Participating countries were asked to include five hospitals agreeing to identify 50 consecutive seizure patients presenting to their ED between 1 August 2016 and 31 August 2017. Anonymous data were collected to a web database. Where quoted, percentages are mean site values and ranges are the 10th-90th centile. RESULTS: Data were collected on 2204 ED visits (47 sites, up to six per country, across 15 countries): 1270 (58%) known epilepsy, 299 (14%) previous blackouts but no epilepsy diagnosis, 634 (29%) with a first seizure. Wide variability was identified for most variables. Of those with known epilepsy, 41.2% (range 26.2%-59.6%) attended the ED in the previous 12 months, but only 64.7% (range 37.2%-79.8%) had seen an epilepsy specialist in the previous 12 months. 67.7% (range 34.0%-100%) were admitted, 53.1% to a neurology ward (range 0.0%-88.9%). Only 37.5% first seizure patients (range 0.0%-71.4%) were given advice about driving. CONCLUSIONS AND RECOMMENDATIONS: It is recommended that in Europe guidance is agreed on the management and onward referral of those presenting to the ED with a seizure; a referral process is created that can be easily implemented; it is ensured that the seizure services receive referrals and see the patients within a short time period; and a simple system is developed and implemented to allow continuous monitoring of key indices of epilepsy care.


Asunto(s)
Epilepsia , Convulsiones , Servicio de Urgencia en Hospital , Epilepsia/diagnóstico , Epilepsia/epidemiología , Epilepsia/terapia , Europa (Continente) , Hospitales , Humanos , Convulsiones/diagnóstico , Convulsiones/terapia
3.
Epilepsy Behav ; 134: 108847, 2022 09.
Artículo en Inglés | MEDLINE | ID: mdl-35914437

RESUMEN

Academic skills, such as reading, spelling and arithmetic, are central to meaningful engagement with society throughout adolescence and into adulthood. The disruption caused by on-going seizure activity places children with drug-resistant epilepsy at a particularly high risk of poor academic attainment. Though epilepsy surgery during childhood has long-been associated with various cognitive changes, less is known of the extent to which pediatric epilepsy surgery impacts academic attainment. The aim of the present systematic review was to identify the nature of the effect of pediatric epilepsy surgery on the core academic skills of reading, writing, and arithmetic. The electronic databases Embase, Medline, PubMed, PsychInfo, OpenAire, and the ISRCTN registry were searched for studies examining academic attainment following epilepsy surgery in childhood, over the last three decades. Two thousand three-hundred and sixty-eight articles were screened for relevance. Thirteen studies met the inclusion criteria. Study quality and reliability were independently assessed by two reviewers. Results indicate that academic attainment primarily stabilizes in the first year following epilepsy surgery. Though changes to learning ability would not be expected in this early recovery phase, this review indicates that children do not, at least, lose the academic skills they have acquired before surgery. Postoperative declines in performance were most notably recorded in assessments of arithmetic, suggesting an area of potential vulnerability in this cohort. These declines were noted in cohorts with the longest periods between seizure onset and surgery. While older age at onset and seizure freedom correlated with improved academic attainment, further research is necessary to fully understand the specific effect of epilepsy surgery on academic attainment. Still, the present review provides valuable information regarding the likely academic outcomes in the early years following surgical treatment for drug-resistant epilepsy.


Asunto(s)
Epilepsia Refractaria , Epilepsia , Adolescente , Adulto , Niño , Humanos , Matemática , Reproducibilidad de los Resultados , Convulsiones
4.
Epilepsia ; 62(11): 2651-2666, 2021 11.
Artículo en Inglés | MEDLINE | ID: mdl-34472627

RESUMEN

OBJECTIVE: This study aimed to determine the prevalence of epilepsy in four European countries (Austria, Denmark, Ireland, and Romania) employing a standard methodology. The study was conducted under the auspices of ESBACE (European Study on the Burden and Care of Epilepsy). METHODS: All hospitals and general practitioners serving a region of at least 50 000 persons in each country were asked to identify patients living in the region who had a diagnosis of epilepsy or experienced a single unprovoked seizure. Medical records were accessed, where available, to complete a standardized case report form. Data were sought on seizure frequency, seizure type, investigations, etiology, comorbidities, and use of antiseizure medication. Cases were validated in each country, and the degree of certainty was graded as definite, probable, or suspect cases. RESULTS: From a total population of 237 757 in the four countries, 1988 (.8%) patients were identified as potential cases of epilepsy. Due to legal and ethical issues in the individual countries, medical records were available for only 1208 patients, and among these, 113 had insufficient clinical information. The remaining 1095 cases were classified as either definite (n = 706, 64.5%), probable (n = 191, 17.4%), suspect (n = 153, 14.0%), or not epilepsy (n = 45, 4.1%). SIGNIFICANCE: Although a precise prevalence estimate could not be generated from these data, the study found a high validity of epilepsy classification among evaluated cases (95.9%). More generally, this study highlights the significant challenges facing epidemiological research methodologies that are reliant on patient consent and retrospective chart review, largely due to the introduction of data protection legislation during the study period. Documentation of the epilepsy diagnosis was, in some cases, relatively low, indicating a need for improved guidelines for assessment, follow-up, and documentation. This study highlights the need to address the concerns and requirements of recruitment sites to engage in epidemiological research.


Asunto(s)
Epilepsia , Epilepsia/diagnóstico , Epilepsia/tratamiento farmacológico , Epilepsia/epidemiología , Europa (Continente)/epidemiología , Humanos , Prevalencia , Estudios Retrospectivos , Convulsiones/prevención & control
5.
Brain Inj ; 34(2): 160-170, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-31674208

RESUMEN

Objective: Conduct a scoping review of literature surrounding acquired brain injury (ABI) sustained secondary to a suicide attempt to establish the current body of research on injury outcomes and rehabilitative needs for this population.Methods: A systematic search of the literature was conducted. Searches were conducted using terms relating to this injury etiology and search results with original or secondary data on individuals with an ABI were included for review.Results: Thirty-two articles were reviewed. Limited data characterizing this population exists in the literature. Findings indicate that this population have generally poorer injury outcomes compared with ABI sustained through other means. Rehabilitative needs are rarely addressed, but limited commentary suggests that extensive pre-morbid conditions, severity of injuries and psychosocial support needs of this population present implications for rehabilitative supports.Conclusion: There is a relative dearth of research examining ABI sustained secondary to a suicide attempt. Collated findings suggest these individuals are rarely recognized in the literature as a distinct ABI population with rehabilitative needs specific to this etiology. Future research should aim to address the gaps identified in the literature, including characterizing the population, establishing pre-morbid conditions and developing tailored rehabilitative support to address complex needs.


Asunto(s)
Lesiones Encefálicas , Intento de Suicidio , Lesiones Encefálicas/epidemiología , Humanos
6.
J Intellect Disabil ; 20(2): 137-51, 2016 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-26968194

RESUMEN

AIM: To document the views of family members of people with an intellectual disability regarding implementation of a personalized model of social support in Ireland. METHOD: Forty family members participated in six focus groups. Data were thematically analysed. RESULTS: Family members' preference for particular types of living arrangements were highly reflective of their lived experience. Facilitators to community living included timely information on proposed moves, adequate staffing, suitable properties and locations and consideration of the characteristics of individuals who share a property. Barriers included high support needs, advanced age, a fear of relinquishing current supports, a fear of the sustainability of newer models of residential support and concerns about community opposition. CONCLUSION: The family perspective to reform is characterized by fear and suspicion of the motivation behind these reforms, with cost efficiencies being perceived as a main driver. Greater information is required to empower families to make informed decisions.


Asunto(s)
Desinstitucionalización , Familia/psicología , Vida Independiente , Discapacidad Intelectual/rehabilitación , Personas con Discapacidades Mentales/psicología , Características de la Residencia , Apoyo Social , Adulto , Grupos Focales , Humanos , Irlanda
7.
Epilepsia ; 55(12): 1902-6, 2014 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-25378101

RESUMEN

This White Paper builds on the publication of the International League Against Epilepsy (ILAE) and International Bureau for Epilepsy (IBE) report "Listening for a change-medical and social needs of people with intellectual disability who have epilepsy" (Listening for a change the medical and social needs of people with epilepsy and intellectual disability, ILAE, 2013). The Paper presents an overview of the recommendations of the report, which aim to improve the health and social care of this important population of people with epilepsy worldwide. Actions in four domains are indicated: (1) the development of standards and initiatives that would enhance diagnosis, pathways to investigation, and treatment; (2) the development of guidelines for treatment, specifically best practice in the management of antiepileptic drugs including rescue medication; (3) the development of standards for primary care, multidisciplinary teamwork, and clinical consultations, with emphasis on the need to enhance communication and improve access to information; and (4) the enhancement of links among different stakeholders including medical services, educational establishments, employment services, organizations providing opportunities for social engagement, and family members. The breadth of needs of this population is a challenge to the epilepsy world, spanning all the professional groupings, care providers, and the research modalities in epilepsy.


Asunto(s)
Anticonvulsivantes/uso terapéutico , Epilepsia , Encuestas de Atención de la Salud/estadística & datos numéricos , Necesidades y Demandas de Servicios de Salud/normas , Discapacidad Intelectual/etiología , Epilepsia/complicaciones , Epilepsia/terapia , Necesidades y Demandas de Servicios de Salud/estadística & datos numéricos , Humanos , Agencias Internacionales , Cooperación Internacional , Obras de Referencia , Apoyo Social
8.
Seizure ; 108: 60-65, 2023 May.
Artículo en Inglés | MEDLINE | ID: mdl-37088056

RESUMEN

PURPOSE: Childhood epilepsy can have lasting effects which extend beyond those attributed to seizures. Previous studies have explored the lived experience of childhood epilepsy, but to our knowledge, no study has afforded adults with a diagnosis of childhood epilepsy the opportunity to reflect on their experiences. In comparison with children, adult respondents have the benefit of ample time having lapsed in order to process their experiences and have greater linguistic competencies. The aim of this study was to retrospectively capture, via interview, adults' perceptions of the impact of epilepsy during their childhood. METHODS: A semi-structured interview schedule was developed in collaboration with patient experts to investigate participants' experiences of growing up with epilepsy in Ireland. Thirteen Irish adults aged between 18 and 35 years, who had their first seizure before the age of 16, were interviewed. Data was analysed using Big Q reflective thematic analysis. RESULTS: Three main themes and 14 subthemes were generated from the data. The main themes comprised (1) disenfranchised grief, (2) need to belong and (3) walking in my shoes. CONCLUSION: All three themes demonstrated a common need for patient care that is cognisant of the child's developmental stage and psychosocial health, and the myriad of factors that contribute to both. Information, resources and clinical engagement with children with epilepsy require the input of patients with current or past experience of childhood epilepsy to guide development. A co-production approach is needed to address some of the disenfranchised and isolating experiences recollected by our participants.


Asunto(s)
Emociones , Epilepsia , Niño , Adulto , Humanos , Adolescente , Adulto Joven , Irlanda/epidemiología , Estudios Retrospectivos , Investigación Cualitativa , Epilepsia/psicología , Convulsiones
9.
Seizure ; 107: 162-171, 2023 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-35811222

RESUMEN

PURPOSE: This study estimated epilepsy prevalence, psychiatric co-morbidity and annual costs associated with epilepsy. METHODS: We used Danish national health registers to identify persons diagnosed with epilepsy and psychiatric disorders, and persons using antiseizure medication and persons using drugs for psychiatric disorders. We calculated the prevalence of epilepsy and co-morbid psychiatric disorders in Denmark on December 31, 2016, using information on epilepsy and psychiatric disorders based on combinations of hospital contacts and use of antiseizure and psychoactive medication. Further, direct and indirect annual costs associated with epilepsy were calculated using individual-level data from a range of socioeconomic registers. RESULTS: There were 5,044,367 persons alive and living in Denmark on December 31, 2016, including 33,628 persons with at least one hospital contact with epilepsy in the previous five years (epilepsy prevalence 0.67% (0.69% males; 0.65% females)). Among these persons with epilepsy, we identified 12,562 (37.4%) persons with a psychiatric disorder or use of drugs used for psychiatric disorders as compared with 801,052 (15.9%) persons in the general population. The estimated total annual individual net costs associated with epilepsy was €30,683. Compared with prevalence estimates on December 31, 2006, the prevalence of epilepsy on December 31, 2016, was slightly higher in the older population and slightly lower in children CONCLUSIONS: Population estimates from national registers provide epilepsy prevalence estimates of approximately 0.6-0.7% - similar to previous reviews of epilepsy prevalence. In addition, the national sample allowed idenitfication of high prevalence of psychiatric disorders and high societal costs associated with epielspy.


Asunto(s)
Epilepsia , Trastornos Mentales , Niño , Masculino , Femenino , Humanos , Prevalencia , Epilepsia/tratamiento farmacológico , Epilepsia/epidemiología , Comorbilidad , Trastornos Mentales/epidemiología , Costos y Análisis de Costo , Dinamarca/epidemiología
10.
Epileptic Disord ; 24(1): 9-25, 2022 Feb 01.
Artículo en Inglés | MEDLINE | ID: mdl-34750095

RESUMEN

This seminar in epileptology addresses Learning Objective 6.1.4 of the International League against Epilepsy Curriculum: Demonstrate the ability to recognize and manage the special needs of persons with epilepsy (and Neurodevelopmental Disorders [NDDs]). The review identifies the essential competencies for neurologists working with people with epilepsy and NDDs, and these competencies are discussed alongside clinical examples. Furthermore, the seminar explores the opportunities offered by integrated service provision between neurology and services for NDD. The epileptic encephalopathies are not a subject of this seminar paper as they are circumscribed by other ILAE learning objectives. This seminar frames the complexity of seizures in association with NDD with a focus on major NDDs; intellectual disability, autism spectrum disorder, and attention deficit hyperactivity disorder. The evidence presented considers epidemiology, co-morbidities, risk factors, mortality, and the diagnostic and treatment challenges. People with NDDs and epilepsy have higher rates of physical and psychiatric co-morbidity, polypharmacy, neuropsychiatric side effects of drugs, and premature mortality including sudden unexpected death in epilepsy. There is a limited Level 1 evidence base to guide assessment and treatment for seizures in adults with NDDs. Therefore, throughout this seminar, the evidence presented for associations and treatment should be observed in context along with its limitations. The evidence for pharmacological treatment of seizures in association with NDDs is presented alongside expert commentary and guidance. There is Level 2 evidence to support treatment with some of the newer anti-seizure medications including brivaracetam, lacosamide, eslicarbazepine acetate, and perampanel as second-line choices. Seizures with a co-morbid NDD should be considered as a collective complex clinical presentation and not discrete conditions. This seminar was co-designed, co-produced and co-authored by an expert by experience and includes case studies and a video to highlight what can go wrong and how it can be avoided.


Asunto(s)
Epilepsia , Trastornos del Neurodesarrollo , Adulto , Competencia Clínica , Epilepsia/diagnóstico , Epilepsia/epidemiología , Epilepsia/terapia , Humanos , Trastornos del Neurodesarrollo/diagnóstico , Trastornos del Neurodesarrollo/epidemiología , Trastornos del Neurodesarrollo/terapia , Neurólogos , Convulsiones/diagnóstico , Convulsiones/tratamiento farmacológico
11.
HRB Open Res ; 5: 27, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35615436

RESUMEN

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare.  Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers' wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff.  Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.

12.
Epilepsy Behav ; 22(1): 112-7, 2011 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-21820360

RESUMEN

Epidemiology continues to be an important research tool in the study of epilepsy and related disorders, providing a better understanding of the frequency, causes and natural history of the disorder. But, beyond risk factors and seizure prognosis, epidemiological studies advance knowledge of many other aspects of epilepsy. Epidemiological studies are being conducted in a new environment in which high quality neuroimaging and fast through-put genomic technologies have become routine tools in clinical diagnosis and therapeutics. Epilepsy is currently understood, not as a single, homogeneous disorder, but a multitude of different clinical syndromes and disease, each with its own cause(s), natural history, and treatment implications. That is why; the comorbidites of epilepsy represent an important area, amenable to study, as they may ultimately have a greater impact on quality of life than epilepsy itself. In this document we share our thoughts on what we think are the future directions for epidemiology in epilepsy.


Asunto(s)
Epilepsia/epidemiología , Convulsiones/epidemiología , Comorbilidad , Métodos Epidemiológicos , Epidemiología/tendencias , Epilepsia/diagnóstico , Predicción , Humanos , Neuroimagen , Convulsiones/diagnóstico
13.
J Intellect Dev Disabil ; 36(1): 49-60, 2011 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-21314593

RESUMEN

BACKGROUND: POMONA II was a European Commission public health-funded project. The research questions in this article focus on age-specific differences relating to environmental and lifestyle factors, and the 17 medical conditions measured by the POMONA Checklist of Health Indicators (P15). METHOD: The P15 was completed in a cross-sectional design for a stratified sample of 1,253 adults with ID across 14 European member states. RESULTS: Older people (55+) were more likely to live in larger residential homes. Rates of smoking and use of alcohol were lower than in the general population but were higher with older age. More than 60% of older adults had a sedentary lifestyle. Cataract, hearing disorder, diabetes, hypertension, osteoarthritis/arthrosis, and osteoporosis were positively associated with advancing age; allergies and epilepsy, negatively associated. CONCLUSIONS: Some evidence of health disparities was found for older people with ID, particularly in terms of underdiagnosed or inadequately managed preventable health conditions.


Asunto(s)
Envejecimiento/fisiología , Estado de Salud , Discapacidad Intelectual/epidemiología , Adulto , Distribución por Edad , Anciano , Anciano de 80 o más Años , Envejecimiento/psicología , Estudios Transversales , Europa (Continente) , Femenino , Accesibilidad a los Servicios de Salud , Disparidades en Atención de Salud , Humanos , Discapacidad Intelectual/clasificación , Estilo de Vida , Masculino , Persona de Mediana Edad , Factores de Riesgo , Población Rural , Índice de Severidad de la Enfermedad , Factores Socioeconómicos , Población Urbana , Población Blanca , Adulto Joven
14.
Disabil Health J ; 14(3): 101092, 2021 07.
Artículo en Inglés | MEDLINE | ID: mdl-33722577

RESUMEN

BACKGROUND: The attitudes and empathy levels of healthcare providers towards persons with a disability have been highlighted as important factors contributing to the quality of healthcare provided to this patient population. OBJECTIVE: This study aimed to investigate whether changes in medical students' attitudes and empathy towards persons with a disability following an educational intervention were maintained when measured again one year post intervention. This study provided a one year longitudinal follow up to a previous study investigating the efficacy of an educational intervention to cultivate positive change in empathy levels and attitudes towards disability. METHOD: An online survey was distributed to medical students who had completed a disability module one year previously during their second year of medical training. The survey comprised measures of attitude, empathy and level of social contact with persons with a disability. RESULTS: Though there was a statistically significant increase in both attitude and empathy measures immediately post intervention, these gains were not sustained when measured one year later. In the case of empathy, levels measured one year later had decreased significantly from baseline measures at pretest. No significant relationship was observed between level of social contact and measures of attitudes and empathy. CONCLUSIONS: While previous research suggests that the educational intervention has been successful in ameliorating both attitudes and empathy levels in the short term, this study highlights the difficulty in sustaining such improvements. Changes to the design and delivery of educational interventions may be necessary for the benefits to persist into the long term.


Asunto(s)
Personas con Discapacidad , Estudiantes de Medicina , Actitud del Personal de Salud , Empatía , Humanos , Encuestas y Cuestionarios
16.
Epilepsia ; 51(5): 845-52, 2010 May.
Artículo en Inglés | MEDLINE | ID: mdl-20002142

RESUMEN

PURPOSE: To examine the prevalence of epilepsy and delivery of epilepsy care in Ireland. METHODS: A multiple case ascertainment methodology was employed examining five nationwide data sources. Data were obtained via (1) a nationwide population-based health survey, (2) secondary data analysis of all reimbursements for prescriptions of antiepilepsy medication nationwide from 2002 to 2005, (3) a nationwide survey of primary care community-based physicians, (4) a nationwide survey of specialist care hospital-based neurologists, and (5) secondary data analysis of inpatient discharges from acute hospitals nationwide for persons with a diagnosis of epilepsy between 2000 and 2005. RESULTS: The findings indicate that nationwide approximately (1) 10 per 1,000 persons (n = 31,000) 18 years and older have self-reported lifetime prevalence of epilepsy, (2) 8.3-9 per 1,000 (approximately 33,000-36,000) persons 5 years and older are being treated for epilepsy using antiepilepsy medication, (3) the typical general practitioner provides care to an average of 13 patients with active epilepsy and epilepsy in remission with treatment, (4) specialist care is provided on a weekly basis to approximately 442 persons with active epilepsy and epilepsy in remission with treatment, and (5) approximately 67 discharges for persons with a primary or secondary diagnosis of epilepsy are reported from acute hospitals weekly. DISCUSSION: This study is distinguished as the first nationwide prevalence study of epilepsy in Europe and provides previously unavailable data on this population in Ireland. Moreover, this study illustrates the merits of secondary data analysis of existing sources when access to clinical sources for the purpose of identifying epidemiologic samples is limited.


Asunto(s)
Atención a la Salud/métodos , Epilepsia/tratamiento farmacológico , Epilepsia/epidemiología , Adolescente , Adulto , Anciano , Anticonvulsivantes/uso terapéutico , Niño , Preescolar , Atención a la Salud/estadística & datos numéricos , Europa (Continente)/epidemiología , Femenino , Encuestas de Atención de la Salud , Encuestas Epidemiológicas , Hospitalización/estadística & datos numéricos , Humanos , Irlanda/epidemiología , Masculino , Persona de Mediana Edad , Médicos de Familia/estadística & datos numéricos , Pautas de la Práctica en Medicina/estadística & datos numéricos , Prevalencia , Factores Socioeconómicos , Encuestas y Cuestionarios
18.
HRB Open Res ; 3: 39, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-33392440

RESUMEN

Background: This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on individuals who have intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 16 countries worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin's Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

19.
Disabil Health J ; 12(1): 65-71, 2019 01.
Artículo en Inglés | MEDLINE | ID: mdl-30115582

RESUMEN

BACKGROUND: Health disparities and disparities in the provision of healthcare to people with disabilities remains a topic of concern. Research demonstrates that attitudes of healthcare providers contribute to this disparity. The approach to disability education and training in medical school warrants evaluation. OBJECTIVES: This study sought to investigate the efficacy of an educational intervention in cultivating positive attitudes towards disability in medical students, and determine the specific impact of an interaction-based hospital visit to patients undergoing neurological rehabilitation. METHODS: Web-based questionnaires were distributed to medical students undertaking a 12-week 'Understanding Disability' module. Measures of anxiety, attitude, competency and empathy were obtained from 65 students at the beginning (T1), middle (T2) and end (T3) of the module. At T2, approximately half of the students had completed a hospital visit and half had not. RESULTS: Scores changed significantly across all constructs between the beginning and end of the module suggesting a positive overall module effect. Findings confirmed a significant difference in anxiety and empathy levels between the group of students who had completed the visit to the rehabilitation hospital by the middle survey wave and those who had not, indicating a specific placement effect. CONCLUSIONS: Our findings suggest that interpersonal contact with individuals with disabilities has a distinct impact on the affective variables of anxiety and empathy. Previous research suggests that this contributes towards improved attitudes to disability. Overall, we provide strong evidence for the inclusion of contact-based educational interventions in medical school to enhance students' attitudes to disability.


Asunto(s)
Ansiedad/prevención & control , Actitud , Competencia Cultural , Personas con Discapacidad , Educación Médica/métodos , Empatía , Estudiantes de Medicina , Adulto , Actitud del Personal de Salud , Atención a la Salud , Femenino , Humanos , Relaciones Interpersonales , Alfabetización , Masculino , Facultades de Medicina , Estudiantes de Medicina/psicología , Encuestas y Cuestionarios , Adulto Joven
20.
J Child Adolesc Psychopharmacol ; 28(3): 180-191, 2018 04.
Artículo en Inglés | MEDLINE | ID: mdl-29486137

RESUMEN

OBJECTIVE: Antipsychotics are licensed for psychosis and are also prescribed for behavior control. This study aims to examine characteristics and outcomes of children prescribed antipsychotics. METHODS: A cohort study using general practice and hospital records linked with education records for 1,488,936 children living in Wales between 1999 and 2015. The characteristics of the children who were prescribed antipsychotics are presented using descriptive statistics and outcomes such as respiratory illness, diabetes, and injury were analyzed using multilevel logistic regression and the prior event rate ratio (PERR). RESULTS: Children with intellectual difficulty/autism were more likely to be prescribed antipsychotics (2.8% have been prescribed an antipsychotic [75% with autism] compared with 0.15% of children without intellectual difficulty). Those with intellectual disabilities/autism were prescribed antipsychotics at a younger age and for a longer period. Antipsychotic use was associated with a higher rate of respiratory illness for all (PERR of hospital admission: 1.55 [95% CI: 1.51-1.598] or increase in rate of 2 per 100 per year in those treated), and for those with intellectual difficulty/autism, there was a higher rate of injury and hospitalized depression. However, among those without intellectual difficulty/autism, there were lower rates of depression (PERR: 0.55 [95% CI: 0.51-0.59]). CONCLUSIONS: This work shows real-world use of antipsychotics and provides information on the rate of possible adverse events in children treated. Antipsychotics are predominantly used for those with intellectual difficulty/autism rather than those with a psychotic diagnosis. There is evidence that rates of respiratory disease, epilepsy, and diabetes are also higher postantipsychotic use for all. In those with intellectual difficulty/autism, hospital-admitted depression and injury are higher postantipsychotic use. The use of antipsychotics for behavioral management is likely to have increased cost implications to the healthcare system.


Asunto(s)
Antipsicóticos/uso terapéutico , Trastorno Autístico/tratamiento farmacológico , Discapacidad Intelectual/tratamiento farmacológico , Pautas de la Práctica en Medicina/estadística & datos numéricos , Adolescente , Factores de Edad , Niño , Trastornos de la Conducta Infantil/tratamiento farmacológico , Preescolar , Estudios de Cohortes , Depresión/epidemiología , Femenino , Hospitalización/estadística & datos numéricos , Humanos , Lactante , Modelos Logísticos , Masculino , Trastornos Psicóticos/tratamiento farmacológico , Factores de Tiempo , Gales
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