Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines.

Epidermolysis Bullosa (EB) is a group of rare genetic disorders resulting in skin fragility and other symptoms. Commissioned by DEBRA International and funded by DEBRA Norway, this evidence-bases guideline provides recommendations to optimise psychosocial wellbeing in EB.An international multidisciplinary panel of social and health care professionals (HCP) and people living with EB was formed. A systematic international literature review was conducted by the panel following the Scottish Intercollegiate Guidelines Network (SIGN) methodology. The resulting papers underwent systematic selection and critique processes. Included papers were allocated to 6 different outcome groups to allow data synthesis and exploration: quality of life, coping, family, wellbeing, access to HCP and pain. Based on the evidence in those papers, recommendations were made for individuals living with EB, family and caregivers and HCP working in the field.Few studies have investigated interventions and which factors lead to better outcomes, but general recommendations can be made. EB is a complex disease impacting enormously on every aspect of psychosocial life. People and families living with EB need access to multidisciplinary support, including psychological guidance, in order to improve quality of life and psychosocial wellbeing. Interventions should stimulate social participation to prevent isolation. People with EB and their families should be able to access a supportive network. HCP should be well supported and educated about the complexity of EB. They should work collaboratively with those around the individual with EB (e.g. schools, employers etc.) to provide psychosocial opportunity and care.Attention should be paid to the psychosocial impact of EB as well as physical needs. Directions for research are indicated.

[Evaluation of the work time used in outpatient ophthalmology techniques]. / Estimación de tiempos médicos para técnicas oftalmológicas ambulatorias.

PURPOSE: To determine the work time used for out-patients seen in the ophthalmology out-patient clinic according to treatment for each diagnosis and examination guidelines. Another objective was to discover the diagnostic related outpatient demand as well as the time spent on each technique. METHOD: We have designed a computer database system that includes examinations, treatments and medical services. Their duration was measured in a random sample of 127 ophthalmology outpatients in the General Hospital of Castellon. Sixty five of the patients had come to their first visit and 62 to the follow-up visits. RESULTS: A new patient spends a mean of 42 minutes and a follow-up patient spends a mean of 27 minutes. The most frequent diagnoses are retinal diseases (30%), cataract (18.6%), glaucoma (11.8%) and ocular motility disorders (11.8%). We present the mean times used by the physician in the ophthalmic techniques used in outpatients. CONCLUSIONS: We have modified the standard times of 30 minutes for the first visit and 15 minutes for the follow-up visit. Data on the work time used for all the ophthalmics techniques in our outpatient clinic are presented. This ophthalmology survey can be used for health care managers to establish the <> and health care plan administration to adapt the resources to the demand.

Estimación de tiempos médicos para técnicas oftalmológicas ambulatorias / Evaluation of the work time used in outpatient ophthalmology techniques

Objetivo: Determinar el tiempo de trabajo consumido en pacientes ambulatorios en la consulta externa de Oftalmología, según protocolos exploratorios y de tratamiento por diagnóstico. Otros objetivos han sido, conocer la demanda ambulatoria por diagnósticos así como el tiempo requerido en cada técnica exploratoria. Método: Hemos diseñado un sistema de información donde se recogen todas las exploraciones, tratamientos y actos médicos. Se ha medido la duración de los mismos en una muestra aleatoria de 127 pacientes de Consultas Externas de Oftalmología del Hospital General de Castellón. Sesenta y cinco pacientes eran primeras visitas y 62 eran revisiones. Resultados: Un paciente de primera visita consume una media de 42 minutos y una revisión una media de 27 minutos, siendo las patologías más frecuentes las enfermedades retinianas (30 per cent), la catarata (18,6 per cent), el glaucoma (11,8 per cent) y las alteraciones oculomotoras (11,8 per cent). Presentamos los tiempos médicos medios consumidos por las técnicas oftalmológicas en pacientes ambulatorios. Conclusión: Modificamos los tiempos estandarizados de 30 minutos la primera visita y 15 minutos la segunda visita. Presentamos los tiempos médicos de todas las técnicas que disponemos en Consultas Externas. Ofrecemos datos a los gestores para establecer los 'Ambulatory Visit Group' (Grupos Relacionados con el Diagnóstico Ambulatorios) y para adecuar los recursos a la demanda (AU)