Genetics and Genomics Teaching in Nursing Programs in a Latin American Country

Lopes-Júnior, Luí­s Carlos; Bomfim, Emiliana de Omena; Flória‐Santos, Milena

doi:10.3390/jpm12071128

Cited by 3 publications

(2 citation statements)

References 59 publications

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“…The work of patient organizations and social movements around the world has given voice to the needs of these people and contributed to rare diseases being considered a global public health problem [ 10 ]. In Brazil, this movement culminated in the publication of the Brazilian Policy of Comprehensive Care for People with Rare Diseases (BPCCPRD) within the SUS, in a very pluralistic way and with social participation [ 41 , 43 , 44 ].…”

Section: Discussionmentioning

confidence: 99%

Health Policies for Rare Disease Patients: A Scoping Review

Lopes-Júnior

Ferraz

Lima

et al. 2022

IJERPH

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Objective: To identify and map the available evidence on the implementation of public health policies directed at individuals with rare diseases, and to compare the implementation of these health policies between Brazil and other countries. Method: A scoping review guided by the PRISMA-ScR and JBI checklists. The search for articles was conducted in eight electronic databases, MEDLINE/Pubmed, Embase, Cochrane Library, Web of Science, Scopus, CINAHL, PsycINFO, and LILACS, using controlled descriptors, synonyms, and keywords combined with Boolean operators. All steps of this review were independently conducted by two researchers. The selected studies were classified by evidence hierarchy, and a generic quantitative tool was used for the assessment of the studies. Results: A total of 473 studies were identified, of which 13 which met all the inclusion criteria were selected and analyzed. Of these studies, 61.5% (n = 8) had final scores equal to or greater than 70%, i.e., they were classified by this tool as being well-reported. The comparative analysis of international rare diseases demonstrates that public authorities’ priorities and recommendations regarding this topic also permeate and apply to the Brazilian context. Conclusions: The evaluation and monitoring of public policies directed at rare disease patients are urgent and necessary to improve and implement such policies with less bureaucracy and more determination for this unique population that requires timely and high-quality care.

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Section: Discussionmentioning

confidence: 99%

Health Policies for Rare Disease Patients: A Scoping Review

Lopes-Júnior

Ferraz

Lima

et al. 2022

IJERPH

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“…Family history of cancer serves as a valuable marker for comprehending the health-disease process [26,[37][38][39][40][41] and plays a significant role in early cancer detection. [42][43][44] Unfortunately, for the HSRC HCR, this variable exhibited a classification of very poor, with an average of 88.95% missing information during the studied period.…”

Section: Histological Type Of Primary Tumormentioning

confidence: 99%

Incompleteness trends of epidemiological variables in a Brazilian high complexity cancer registry: An ecological time series study

Grippa,

Dell’Antonio,

Salaroli

et al. 2023

Medicine

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Hospital Cancer Registries serve as a vital source of information for clinical and epidemiological research, allowing the evaluation of patient care outcomes through therapeutic protocol analysis and patient survival assessment. This study aims to assess the trend of incompleteness in the epidemiological variables within the Hospital Cancer Registry of a renowned oncology center in a Brazilian state. An ecological time-series study was conducted using secondary data from the Hospital Santa Rita de Cássia Cancer Registry in Espírito Santo between 2000 and 2016. Data completeness was categorized as follows: excellent (<5%), good (5%–10%), fair (10%–20%), poor (20%–50%), and very poor (>50%), based on the percentage of missing information. Descriptive and bivariate statistical analyses were performed using the free software RStudio (version 2022.07.2) and R (version 4.1.0). The Mann–Kendall test was used to assess temporal trends between the evaluated years, and the Friedman test was employed to evaluate quality scores across the years. Among the variables assessed, birthplace, race/color, education, occupation, origin, marital status, history of alcohol and tobacco consumption, previous diagnosis and treatment, the most important basis for tumor diagnosis, tumor-node-metastasis staging (TNM) staging, and clinical tumor staging by group (TNM) showed the highest levels of incompleteness. Conversely, other epidemiological variables demonstrated excellent completeness, reaching 100% throughout the study period. Significant trends were observed over the years for history of alcohol consumption (P < .001), history of tobacco consumption (P < .001), TNM staging (P = .016), clinical tumor staging by group (TNM) (P = .002), first treatment received at the hospital (P = .012), disease status at the end of the first treatment at the hospital (P < .001), and family history of cancer (P < .001), and tumor laterality (P = .032). While most epidemiological variables within the Hospital Santa Rita de Cássia Cancer Registry exhibited excellent completeness, some important variables, such as TNM staging and clinical staging, showed high levels of incompleteness. Ensuring high-quality data within Cancer Registries is crucial for a comprehensive understanding of the health-disease process.

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