NEONATAL CARE
Guideline objectives: to highlight management priorities in neonatal EB care and provide clinicians access to recommended treatment and preventative care options. This guideline is intended to inform and support clinicians of neonates with EB, to provide a comprehensive, expert, evidence-informed resource for neonatal EB care, to decrease the incidence of avoidable neonatal EB complications, to promote inclusion of education, preventative care, and multidisciplinary team management for neonatal EB care, and to highlight resources required for EB care after leaving hospital.
Target users: paediatricians, neonatologists, midwives, neonatal and paediatric nurses, dermatologists, anaesthetists, family practice physicians, psychologists, occupational therapists, physiotherapists, dietitians, genetic counsellors, and social workers and parents/carers.
NEONATAL EPIDERMOLYSIS BULLOSA: A CLINICAL PRACTICE GUIDELINE
Published 2024 | Funded by DEBRA UK
Please note: The final typeset article will be published in due course.
Topics covered in these guidelines include:
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Diagnosis and parent psychosocial support
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Hospital management: medical monitoring, wound care, and pain
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Feeding and nutrition
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Discharge planning and EB Education
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NEONATAL EB HOSPITAL IMPLEMENTATION TOOL: AN EXAMPLE NEONATAL HOSPITAL ADMISSION GUIDE
Published 2024 | Funded by DEBRA UK
This document provides guidance to support clinical judgment of trained health professionals within a hospital environment, and communication between treating hospitals and EB specialist teams. This tool can be used in conjunction with the recommendation tables from the neonatal EB clinical practice guideline.
How to use this hospital implementation tool:
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Print relevant sections to make available for hospital staff, parents/carers, or community health professionals
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Consider availability of and access to local products and services.
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Alter the document as provided to suit your hospital/regions health system and availability of services.
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