Banca de DEFESA: LIVIA MARA BATISTA XAVIER

Uma banca de DEFESA de MESTRADO foi cadastrada pelo programa.
DISCENTE : LIVIA MARA BATISTA XAVIER
DATA : 02/10/2019
HORA: 09:00
LOCAL: sala 05 ISC
TÍTULO:

BULLEY EPIDERMOLYSIS: ORGANIZATION OF HEALTH CARE SERVICES AND EPIDEMIOLOGICAL PROFILE OF PATIENTS ATTENDED IN SALVADOR, BAHIA.

PALAVRAS-CHAVES:

Bullous Epidermolysis, Rare Diseases, Health Care Network.

PÁGINAS: 52
GRANDE ÁREA: Ciências da Saúde
ÁREA: Saúde Coletiva
RESUMO:

Bullous Epidermolysis (EB) is a rare non-contagious condition that has as its main characteristic the fragility of the skin and mucous membranes, leading to the appearance of blisters and lesions, due to minimal trauma, excessive heat or spontaneously. Very rare diseases are considered to be those of very low frequency in the general population. In Brazil, a rare disease is one that affects up to 65 people in every 100,000 individuals (BRAZIL, 2014). Despite having a low individual prevalence, the high number of rare diseases has a significant impact on the health budget, as they require care by specialized staff, technologies and high cost medicines, becoming a challenge to the public health system when seeking ensure universal coverage and comprehensive care. This study aimed to analyze the clinical and operational aspects of the care of patients with EB, by identifying the knowledge of professionals about the clinical and operational aspects of the disease, and sought to describe the socio demographic and clinical characteristics of patients treated in a service. Salvador-Bahia reference point. For this, an observational quantitative study was performed

of descriptive type, through the application of a structured questionnaire to professionals and review of medical records. The study included 47 primary care and specialized health professionals and 30 outpatients at the referral service. The results indicated that most professionals knew the clinical aspects of EB, but were unaware of some important points in the management of the disease. reference, as the referral and instruments for regulation. Regarding the profile of patients, the dystrophic form was the most prevalent, being observed the need for psychosocial care and the strengthening of monitoring in Primary Health Care. Therefore, it is concluded that there are flaws in the care network for people with rare disease and The need to strengthen the care network for people with EB, through the construction of a care line, with definition of care flows and interdisciplinary follow-up at all levels of care, in addition to the permanent education of the teams, seeking to guarantee this population care. dignified and efficient and thereby promote a better quality of life.

MEMBROS DA BANCA:
Interno - 2334417 - ALCIONE BRASILEIRO OLIVEIRA CUNHA
Interno - 096.232.135-49 - JUAREZ PEREIRA DIAS - UFBA
Externo à Instituição - ROSANA SANTOS MOTA