دورية أكاديمية
Neonatal epidermolysis bullosa: a clinical practice guideline
| العنوان: | Neonatal epidermolysis bullosa: a clinical practice guideline |
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| المؤلفون: | Saad, Rebecca, Duipmans, José, Yerlett, Natalie, Plevey, Katie, McCuaig, Catherine, Woolfe, William, Steinau, K, Phillips, Jennifer, Azzopardi, Nina, Thompson, Kerry, Ferreira da Rocha, Anna Carolina, Torres-Pradilla, Maurico, Ott, Hagen, Patton, Declan, Moore, Zena, Murphy, Paul, Mayre-Chilton, Kattya |
| المساهمون: | DEBRA UK |
| المصدر: | British Journal of Dermatology ; volume 190, issue 5, page 636-656 ; ISSN 0007-0963 1365-2133 |
| بيانات النشر: | Oxford University Press (OUP) |
| سنة النشر: | 2024 |
| الوصف: | DEBRA International is undertaking a long-term initiative to develop clinical practice guidelines (CPGs) for epidermolysis bullosa (EB), to improve the clinical care of people living with EB. Current neonatal care is based on evidence, clinical expertise and trial and error, with collaboration between the EB specialist team, parent or carer and patient, and is dependent on the neonate’s individual presentation and type of EB. Early intervention based on research and clinical practice is needed to establish a foundation of knowledge to guide international practitioners to create and improve standards of care and to be able to work effectively with those newly diagnosed with EB. This CPG was created by an international panel with expertise working with persons with EB. The CPG focuses on neonatal care using a systematic review methodology covering four key areas: (i) diagnosis and parental psychosocial support; (ii) hospital management: medical monitoring, wound care and pain; (iii) feeding and nutrition; and (iv) discharge planning and EB education. These four areas highlight the importance of a multidisciplinary team approach, to provide a patient-specific holistic care model that incorporates the needs and wishes of the parents and carers. The Hospital Implementation Tool included promotes transfer of theory to clinical practice. |
| نوع الوثيقة: | article in journal/newspaper |
| اللغة: | English |
| DOI: | 10.1093/bjd/ljae006 |
| DOI: | 10.1093/bjd/ljae006/56822123/ljae006.pdf |
| الإتاحة: | https://doi.org/10.1093/bjd/ljae006Test https://academic.oup.com/bjd/article-pdf/190/5/636/57262146/ljae006.pdfTest |
| حقوق: | https://creativecommons.org/licenses/by-nc/4.0Test/ |
| رقم الانضمام: | edsbas.6DDD2005 |
| قاعدة البيانات: | BASE |
| DOI: | 10.1093/bjd/ljae006 |
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