Banca de DEFESA: KARLA REGINA FIGUEIROA BATISTA

Uma banca de DEFESA de MESTRADO foi cadastrada pelo programa.
DISCENTE : KARLA REGINA FIGUEIROA BATISTA
DATA : 31/08/2023
HORA: 19:00
LOCAL: Google Meeting
TÍTULO:

EVALUATION OF ACCESS TO HEALTH SERVICES AND SOCIAL SUPPORT FOR PATIENTS WITH RARE GENETIC DISEASES IN THE STATE OF RIO GRANDE FROM THE NORTH, BRAZIL

PALAVRAS-CHAVES:

Rare Diseases, Accessibility to health services, Social Support.

PÁGINAS: 102
GRANDE ÁREA: Ciências da Saúde
ÁREA: Saúde Coletiva
RESUMO:

People with rare genetic diseases (RGDs) face a series of challenges in monitoring
their condition, from birth to diagnosis and treatment, the whole routine is changed and
situations of great anguish and suffering plague patients and their families. Therefore, the
present study aimed to investigate the impact of access to health and social support, on the
population with rare genetic diseases, caused by the Covid-19 pandemic. With regard to
methodology, it is a descriptive observational cross-sectional study that falls within the scope
of quali-quantitative research. The fields of study will be: Hospital Regional Dr. Tarcísio
Vasconcelos Maia – HRTM; Mossoroense League of Studies and Fight against Cancer –
LMECC; Hemotherapy and/or Hematology Care Center of Mossoró – HEMOCENTRO;
Central Unit of Therapeutic Agents – UNICAT; and DGR's Association of Rio Grande do
Norte. The interest and choice of these sites was due to the fact that they represent a reference
for the treatment/support of patients with DGR's. Inclusion Criteria: Having a confirmed
diagnosis for any type of Rare Genetic Disease (over 18 years old), or being the legal guardian
of the patient (if under 18 years old or legally incapable); A guardian must be present at the
time of the interview, if minors or children. Exclusion criteria: Patients with a suspected Rare
Genetic Disease, but the diagnosis is not completely closed; Cognitive inability of the
interviewee (patient or caregiver) to understand the instrument's questions. To carry out the
data collection, the instrument “Perception Scale of Access to Health and Social Support for
people affected by Rare Diseases (Passs)”, calibrated and validated (Salviano et al., 2020),
was used. The instrument comprises four domains with a total of 38 items, namely: 08 items
from Health Resources, 07 items from Financial Resources, 13 items from Social Aspects and
10 items from Individual Aspects. 152 patients with DGR's were analyzed, 90 men and 62
women. Regarding the sociodemographic characteristics of the patients, individuals aged 5 to
18 years (88-57.9%), with incomplete primary education (71-46.7%) and from Natal (47-
31.9%) and region predominated. metropolitan area of Natal (47- 31.9%). The most
expressive family income was 1 to 2 salaries (102-70%) (Table 1), which is understandable,
since the vast majority of caregivers have a low level of education or are illiterate. The main
genetic diseases found in this study were neuromuscular DGR's: Muscular Dystrophies with
46 cases, mostly Duchenne, followed by 23 cases of Spinal Muscular Amyotrophy types 1,2,3
and Mucopolysaccharidosis types 1,4,6 with 19 cases. The survey results show reasonably
adequate support, health resources and social aspects are above average and financial
resources were regular. However, individual aspects were compromised and, as a
consequence of the Covid-19 pandemic, there were interruptions, cancellations and
postponements in the treatment of patients, with teleconsultation and/or online monitoring
being fundamental actions for good care. Thus, it is necessary to constantly improve strategies
for valuing and improving the National Policy for Comprehensive Care for people with DGR,
aiming to contribute to a more effective network of health services.

MEMBROS DA BANCA:
Externa à Instituição - ELLAINE DÓRIS FERNANDES CARVALHO
Interna - 4256 - ELLANY GURGEL COSME DO NASCIMENTO
Interno - 3789 - THALES ALLYRIO ARAÚJO DE MEDEIROS FERNANDES