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1.
J Healthc Qual Res ; 35(5): 273-279, 2020.
Artigo em Espanhol | MEDLINE | ID: mdl-33011147

RESUMO

INTRODUCTION: Duchenne muscular dystrophy is a complex disease that requires a multidisciplinary and coordinated approach. Given that therapeutic efforts are centred on improving the quality of life of the patient, the aim of this study is to find out the views of young people and adolescents with Duchenne muscular dystrophy, their families, and health professionals as regards the healthcare provided by the hospital in order to improve their quality of life. METHODS: A qualitative study was conducted using 3 focal groups consisting of patients, families, and healthcare professionals. A thematic guide was prepared, and the information from the interviews was gathered using a sound recorder. In order to analyse the information, the transcriptions were coded and the significant data of each interview were extracted and grouped into various topics. RESULTS/CONCLUSIONS: The main worries of the 3 groups were along the same line. On the one hand, the importance of a coordinated multidisciplinary team in the same unit that provides the integral care. On the other hand, sport as a common interest in these adolescents, and the consideration of a positive relationship between leisure and quality of life, finding that their participation in physiotherapy groups of great use. To achieve this objective, it is necessary to improve the coordination between the hospital and the different groups. The parents also demanded better cover in the social and psychological care offered by the hospital. Lastly, the importance of humanising the care was mentioned (privacy, adapting of structures, transmission of information, sexuality…).


Assuntos
Distrofia Muscular de Duchenne , Adolescente , Grupos Focais , Humanos , Distrofia Muscular de Duchenne/terapia , Pais , Pesquisa Qualitativa , Qualidade de Vida
2.
An Pediatr (Barc) ; 68(5): 511-5, 2008 May.
Artigo em Espanhol | MEDLINE | ID: mdl-18448000

RESUMO

INTRODUCTION: Cerebral palsy is usually spastic, and baclofen, benzodiazepines and tizanidine are considered as oral treatments. The aim of this paper is to demonstrate tizanidine management in children with generalized spasticity. PATIENTS AND METHODS: Scheduled medical uses and dosing of tizanidine in our hospital are shown. It was assessed in 45 children. Appearance and repercussions of side-effects were studied using Global Tolerance to Treatment Scale, and drug tolerance was studied by subjective assessment by parents, children or therapists. RESULTS: were analysed using SPSS version 11.5. RESULTS: Treatment with tizanidine was carried out with 1 mg/ day in 18 mo-7 yr old children, 2 mg/day in 7-12 yr old children as initial doses, and for those older than 12 yr similar dosing to that in adults. Tolerance was excellent in 79.3 % of children. Sedation was the most uncomfortable side- effect. Subjective assessment by 92.9 % of parents was good. DISCUSSION: Tizanidine shows greater capacity for binding to brain receptors, and therefore more effective for brain spasticity, better tolerance and higher approval. Therefore, it is an ideal treatment for generalised spasticity in cerebral palsy.


Assuntos
Paralisia Cerebral/tratamento farmacológico , Clonidina/análogos & derivados , Parassimpatolíticos/uso terapêutico , Criança , Pré-Escolar , Clonidina/uso terapêutico , Esquema de Medicação , Feminino , Humanos , Lactente , Masculino
3.
An. pediatr. (2003, Ed. impr.) ; 68(5): 511-515, mayo 2008. tab
Artigo em Es | IBECS | ID: ibc-64583

RESUMO

Introducción: La forma más frecuente de parálisis cerebral infantil (PCI) es la espástica, y se suelen considerar para su tratamiento oral baclofeno, benzodiacepinas y tizanidina. El objetivo de este trabajo es mostrar el manejo de la tizanidina en los casos de espasticidad generalizada. Pacientes y métodos: Se presentan las indicaciones y dosis de la tizanidina en nuestro centro de forma protocolizada. Se probó en 45 niños. Se estudiaron la aparición y las repercusiones de los efectos secundarios mediante la escala de tolerancia global al tratamiento, y la aceptación del fármaco por medio de la valoración subjetiva de los padres, niños o terapeutas. Los resultados se estudiaron con el paquete estadístico SPSS 11.5. Resultados: El tratamiento con tizanidina se aplicó con una dosis inicial de 1 mg/día en niños de 18 meses a 7 años, 2 mg/día en los niños de 7 a 12 años, y en los mayores con una dosificación similar a la de los adultos. La tolerancia fue excelente en el 79,3 % de los casos. La somnolencia fue el efecto más molesto. La valoración subjetiva fue buena para el 92,9 % de los padres. Discusión: La tizanidina tiene mayor capacidad para actuar en receptores cerebrales y menor cantidad de reacciones adversas, por tanto, mayor eficacia en la espasticidad cerebral, mejor tolerancia y mayor aceptación que los otros antiespásticos orales. Por ello es un tratamiento ideal para la espasticidad generalizada por PCI (AU)


Introduction: Cerebral palsy is usually spastic, and baclofen, benzodiazepines and tizanidine are considered as oral treatments. The aim of this paper is to demonstrate tizanidine management in children with generalized spasticity. Patients and methods: Scheduled medical uses and dosing of tizanidine in our hospital are shown. It was assessed in 45 children. Appearance and repercussions of side-effects were studied using Global Tolerance to Treatment Scale, and drug tolerance was studied by subjective assessment by parents, children or therapists. Results were analysed using SPSS version 11.5. Results: Treatment with tizanidine was carried out with 1 mg/ day in 18 mo-7 yr old children, 2 mg/day in 7-12 yr old children as initial doses, and for those older than 12 yr similar dosing to that in adults. Tolerance was excellent in 79.3 % of children. Sedation was the most uncomfortable side- effect. Subjective assessment by 92.9 % of parents was good. Discussion: Tizanidine shows greater capacity for binding to brain receptors, and therefore more effective for brain spasticity, better tolerance and higher approval. Therefore, it is an ideal treatment for generalised spasticity in cerebral palsy (AU)


Assuntos
Humanos , Masculino , Feminino , Criança , Paralisia Cerebral/diagnóstico , Paralisia Cerebral/tratamento farmacológico , Protocolos Clínicos , Espasticidade Muscular/tratamento farmacológico , Imidazóis/uso terapêutico , Clonidina/uso terapêutico , Baclofeno/uso terapêutico , Paralisia Cerebral/epidemiologia
4.
Rehabilitación (Madr., Ed. impr.) ; 41(1): 19-24, ene. 2007. ilus, tab
Artigo em Es | IBECS | ID: ibc-051397

RESUMO

Objetivo. El objetivo del presente trabajo es la descripción de las características demográficas de las lesiones medulares no traumáticas (LMNT) debidas a estenosis de canal, encuadrado en un hospital general, estudiando la evolución neurológica y los resultados funcionales al alta, tras el tratamiento rehabilitador. Material y métodos. Se valoraron prospectivamente 54 pacientes con LMNT en el Servicio de Rehabilitación del Hospital General Gregorio Marañón, durante un período de 16 meses. Se estudiaron las características demográficas y clínicas, la intervención rehabilitadora y los resultados funcionales (FIM). El análisis estadístico fue realizado con el programa SPSS. Resultados y conclusiones. En 16 de los pacientes la causa de la lesión medular fue la estenosis de canal (29,6 %), con una edad media de 69 años. En todos los casos se observó que los valores al alta eran mejores que al ingreso de forma estadísticamente significativa en el índice sensitivo-motor de ASIA (p = 0,021) y en el FIM (p = 0,005) en los apartados de autocuidados y movilidad/locomoción. La mejoría en el FIM motor se relacionaba con los días de tratamiento rehabilitador, de forma que los mejores resultados se obtenían con tiempos de rehabilitación medios (p = 0,037). También se observó que el resultado funcional aumentaba cuando el tiempo desde la cirugía hasta ser valorado en rehabilitación era corto (p = 0,009). La demora del inicio del tratamiento tras la valoración fue menor de 7 días. A pesar de la edad avanzada, los pacientes con estenosis de canal obtienen mejorías neurológicas y funcionales tras el tratamiento rehabilitador


Aim. This study aimed to describe the demographic characteristics of non-traumatic spinal cord injury (SCI) due to spinal stenosis occurring within a general hospital and study the neurological evolution and functional outcome after rehabilitation discharge. Materials and methods. Fifty four non-traumatic SCI patients were prospectively assessed in the Gregorio Marañón Hospital Physical Medicine and Rehabilitation Department for 16 months. Demographic and clinical characteristics, rehabilitation performance and functional outcomes (FIM) were studied. Statistical analysis was performed with SPSS software. Results and conclusions. SCI etiology was spinal stenosis in 16 patients (29.6 %), with a mean age of 69 years. All the patients had statistically significant neurological (p = 0.021) and functional (p = 0.005) improvements from admission to discharge in the categories of self-care and mobility/locomotion. FIM motor improvement was related with days of rehabilitation treatment, so that the best results were obtained with mean rehabilitation time (p = 0.037). It was also observed that the functional outcome increased when the time from surgery to evaluation in rehabilitation was short (p = 0.009). Delay in treatment onset after evaluation was less than 7 days. In spite of the advanced age, the patients with canal stenosis obtained neurological and functional improvements after rehabilitation treatment


Assuntos
Humanos , Bulbo/lesões , Estenose Espinal/fisiopatologia , Claudicação Intermitente/etiologia , Bulbo/fisiopatologia , Estenose Espinal/reabilitação
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