Methods to Assess Patients with Epidermolysis Bullosa across their Lifespan: a Scoping Review
| Autor: | Maximowicz, Santiago Miguel, Stegmann, Jorgelina, Campos, Letícia Nunes, Erinalva Batista, Stegmann, Carlos, Pintos, Oriana, Rudzinski, Ivo, Yazbek, Rashid Benítez, Curto, Santino, Españon, Morena Gabriela, Freyre, María Laura |
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| Rok vydání: | 2023 |
| Předmět: |
Medical Sciences
Rare Disease Patient-centered care Follow-up Scoping Review Medicine and Health Sciences Screening Diagnostic Stratification Analytical Diagnostic and Therapeutic Techniques and Equipment Epidermolysis Bullosa Medical Genetics Other Analytical Diagnostic and Therapeutic Techniques and Equipment |
| DOI: | 10.17605/osf.io/amb5t |
| Popis: | Objective: This scoping review aims to comprehend the nature and the extent of the available evidence regarding methods to assess patients with epidermolysis bullosa (EB). Introduction: Inherited EB is a rare genodermatosis characterized by extreme fragility of the skin and mucous membranes, which gives rise to the formation of blisters and ulcers following minor trauma. Due to its heterogeneous presentation, EB is significantly misdiagnosed, requiring a broader assessment to ensure an early clinical suspicion and better quality of care for the disease-related morbidities. Inclusion criteria: We will include human-based research articles based on qualitative or quantitative methods published in peer-reviewed journals that describe methods to assess EB patients, particularly those related to diagnosis, screening, classification, stratification, and follow-up. Only articles with full text available, published between 2018 and 2023, and written in English and Spanish will be included. Methods: The search strategy will be developed by a librarian and conducted on six databases. Selection of studies will be independently conducted by calibrated reviewers through the title, abstract, and full-text screening, followed by data charting. Quantitative (e.g., frequencies and percentages) and qualitative (e.g., classification of assessment methods) synthesis will be conducted. |
| Databáze: | OpenAIRE |
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