RESUMO
INTRODUCTION: Epidermolysis bullosa (EB) is a relatively infrequent genodermatosis for which there is still no cure, and which impacts the quality of life of those that are affected by it. The Quality of Life evaluation in Epidermolysis Bullosa (QoLEB) questionnaire was specifically developed for English-speaking persons with EB. OBJECTIVES: To undertake the transcultural adaptation and analysis of the psychometric properties of a Spanish version of the QoLEB questionnaire. METHOD: We designed an observational study to implement the process of translation and validation of the scale in accordance with World Health Organisation guidelines. We assessed the content validity of the Spanish version with the participation of 33 adult patients who presented with four principal subtypes of EB. The subjects were examined and evaluated using the QoLEB and Short Form-36 (SF-36) questionnaires. RESULTS: The Spanish version of the QoLEB displayed excellent internal consistency and content validity, α = 0.91. Test-retest reliability was likewise excellent (ps = 0.93), as was the reliability among subtypes (range ps = 0.82-0.93). The functional part of the QoLEB correlated well with the SF-36 physical component summary (ps = 0.70). The emotional QoLEB was moderately correlated with the SF-36 mental component summary (ps = 0.49). Significant discriminant validity existed between the global score of the questionnaire (p = 0.033) and the functional scale (p = 0.003). CONCLUSIONS: The Spanish version of the QoLEB questionnaire can be recommended for use in any subsequent studies seeking to assess the efficacy of possible treatments and care programmes in this group.
Assuntos
Epidermólise Bolhosa , Qualidade de Vida , Adulto , Epidermólise Bolhosa/psicologia , Humanos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários , TraduçõesRESUMO
Se expone el caso de un paciente de 18 años de edad, domiciliado en otra provincia, cuyos padres cuidadores, tras 2 años de búsqueda, consiguen contactar con la Unidad de Telecuidados del Hospital Virgen Macarena de Sevilla. El paciente presenta úlcera por presión (UPP) isquiática, tratada por el padre, quien claudica en la primera visita a la Unidad. Una necesidad básica, innegociable, del paciente son sus estudios universitarios, tanto la asistencia a clase como los exámenes. Se han realizado curas de la herida y educación sanitaria a madre cuidadora, a la que se instruye en el manejo del instrumental, los productos de curas, así como las medidas preventivas relacionadas con la sedestación, etc. Se ha abordado al mismo tiempo el problema postural origen de la UPP, resuelto con la adquisición por parte de los cuidadores de una superficie especial, un cojín terapéutico estabilizador. Con este caso demostramos que con las unidades de telecuidados se puede realizar un abordaje a distancia en la salud y necesidades de los pacientes, utilizando los medios de telecomunicación que tenemos a nuestro alcance para poder ofrecer una atención integral orientada a pacientes y cuidadores
The patient set out below is 18 years old, resident in a different province, and to whom caregiver parents, after two years searching, managed to contact the Hospital Virgen Macarena Telecare Unit in Seville. The patient shows ischial pressure ulcers treated by the dad, who gave up any hope in the first visit to the Unit. A basic non-negotiable need for the patient was to attend to his college classes and exams. Wound cures have been performed and sanitary education has been given to the caregiver mom, as well as preventive measures related to the seating position, etc. Original pressure ulcer posture problems have been also dealt with the acquisition of a therapeutic stabilizing cushion by the caregiver parents. According to this case we prove that with the Telecare Units, we can remotely tackle patients' health and needs by using the telecommunication means within our reach in order to provide comprehensive patients and carers-oriented assistance
Assuntos
Humanos , Masculino , Adolescente , Úlcera por Pressão/terapia , Consulta Remota/organização & administração , Telemedicina/organização & administração , Disrafismo Espinal/complicações , Imobilização/efeitos adversos , Educação em Saúde , Tecnologia AssistivaRESUMO
En el presente artículo presentamos la evolución clínica de una paciente conuna lesión por presión estadio IV en el sacro. Describimos la utilización deuna nueva pauta de desbridamiento mediante la combinación de un apósitode hidrofibra de hidrocoloide con plata iónica (Aquacel® Ag) y solución de polihexanidabetaina (Prontosan®) en una herida con elevada carga bacteriana yde manejo sumamente complejo. Mediante la pauta de desbridamiento descrita,conseguimos una evolución favorable de la lesión en un corto período detiempo de acuerdo con las características clínicas del paciente y de la lesión.Consideramos que la pauta de desbridamiento descrita puede ser de gran utilidaden aquellos pacientes con elevada proporción de tejido desvitalizado, quese requiera de un desbridamiento rápido y poco agresivo, así como en aquellospacientes con lesiones cavitadas y de difícil acceso para el profesional (AU)
In this article we present the clinical evolution of a patient with a pressure ulcer,stage IV, in the area of the sacrum. We describe the utilization of a new guidelineof debridement by means of the combination of dressing the dressing of Hydrofibertechnology with ionic silver (Aquacel® Ag) and solution of polihexanida betaina(Prontosan®) in wound with high bacterial load and of extremely complex managing.By means of the guideline of debridement described we obtained a favourableevolution of the pressure ulcer, considering the clinical characteristics of the patientand ulcer we obtained an excellent result in a short period of time. Weconsider that the guideline of debridement described can be of great usefulness inthose patients with high proportion of desvitalizated tissue, which is needed of arapid and slightly aggressive debridement, as well as in those patients with cavityinjuries and of difficult access for the professional (AU)
