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Nurses' knowledge about Berardinelli-Seip Congenital Lipodystrophy
Verônica Kristina Cândido Dantas1, Joice da Silva Soares1, Lázaro Batista de Azevedo Medeiros1,2
1Faculdade de Ciências da Saúde do Trairi, Universidade Federal do Rio Grande do Norte, Santa Cruz, RN, Brazil.
Plos One
|June 5, 2018
Summary
Most nurses in Rio Grande do Norte, Brazil, lack knowledge of Berardinelli-Seip Congenital Lipodystrophy (BSCL), a rare adipose tissue disorder. This highlights an urgent need to improve healthcare professional education and patient care for BSCL.
Area of Science:
- Genetics and rare diseases
- Endocrinology
- Public health
Background:
- Berardinelli-Seip Congenital Lipodystrophy (BSCL) is a rare autosomal recessive condition marked by near-total absence of adipose tissue.
- A founder effect has led to a higher prevalence of BSCL in Brazil's Rio Grande do Norte (RN) state, necessitating specialized knowledge among healthcare providers.
- Nurses, as primary healthcare contacts, play a crucial role in managing patients with rare diseases like BSCL.
Purpose of the Study:
- To assess the knowledge level of nursing professionals regarding Berardinelli-Seip Congenital Lipodystrophy (BSCL).
- To identify gaps in understanding and healthcare practices related to BSCL among nurses in key hospitals within RN, Brazil.
Main Methods:
- A questionnaire-based survey was administered to 199 nurses.
- Participants were recruited from two major hospitals in RN: Hospital Regional Mariano Coelho (HRMC) and Hospital Universitário Onofre Lopes (HUOL).
Main Results:
- The study revealed a significant deficit in knowledge about BSCL among the surveyed nursing professionals.
- Despite encountering patients with BSCL, most nurses demonstrated a lack of awareness regarding the disease and its specific care requirements.
- Findings indicated a substantial gap between current nursing practice and the necessary standards for effective BSCL patient management.
Conclusions:
- There is an urgent need for enhanced education and training programs for nurses in RN concerning Berardinelli-Seip Congenital Lipodystrophy.
- Improving nurses' knowledge of BSCL is critical to ensure adequate healthcare and improve patient outcomes for individuals with this rare condition.
- Substantial interventional efforts are required to bridge the existing gap between current practices and optimal care patterns for BSCL patients.
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