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.

Background: In oncology, the prevalence of symptoms is preferentially analyzed in isolation instead of being considered in clusters. However, clinical practice shows that symptoms rarely occur separately but rather form clusters that share common underlying mechanisms in terms of intensity and severity, creating a synergistic effect among them, which can even help predict the development of future symptoms. Objective: To identify and gather evidence on the prevalence, composition, severity, and predictors of cancer symptom clusters in adult cancer patients undergoing chemotherapy. Methods: This systematic review and meta-analysis protocol was developed in compliance with PRISMA-P. Observational and experimental study designs will be included. MEDLINE/PubMed, Cochrane Library, Embase, CINAHL, PsycINFO, Web of Science, Scopus, LILACS, clinical trials.gov-NIH, the British Library, Google Scholar, and preprints [medRXiv] will be searched with no restrictions on idioms, dates, or settings. Two investigators will independently select the studies, perform data extraction, and critically appraise the risk of bias of the included studies. Heterogeneity among the studies will be assessed using the I² statistic. If meta-analysis was feasible, a random-effect model analysis will be carried out. For data analysis, the pooled effect will be estimated considering 95% confidence interval and α = 5%. In addition, the certainty of evidence will be rated based on Cochrane methods in accordance with the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE). Discussion: To the best of our knowledge, this systematic review and meta-analysis will be the first to identify and critically assess evidence regarding the prevalence, composition, severity, and predictors of cancer symptom clusters in adult cancer patients undergoing chemotherapy. We intend to provide health professionals with subsidies to reflect on a better understanding of symptom clusters in adult cancer patients, with the aim of contributing to the development of evidence-based therapeutic interventions and success in clinical practice. PROSPERO registration number: CRD42021248406.

Objective: To evaluate the completeness and consistency of data from hospital-based cancer registries (HCRs) in a Brazilian state. Methods: This retrospective descriptive study was based on secondary data from an HCR in the state of Espírito Santo (ES) between 2010 and 2017. The data were collected between August and November 2020 by the ES State Health Department (SESA/ES). Cancer data were obtained from the HCR of ES using the tumor registration form of the Brazilian Hospital Cancer Registry Integrator and complete databases within the SESA/ES. The incompleteness of the data was classified as excellent (50%), according to the percentage of the absence of information. Descriptive statistical analyses were performed using Statistical Package for the Social Sciences (SPSS^® Inc., Chicago, IL, USA) version 20.0. Results: Complete data were observed for the variables of sex, date of the first hospital visit, and histological type of the primary tumor; that is, there were no missing data. Most epidemiological variables, including age, origin, date of first tumor diagnosis, previous diagnosis and treatment, location of the primary tumor, first treatment received at the hospital, date of death of the patient, and probable location of the primary tumor, were classified as having excellent completeness throughout the study period. However, the variables schooling, smoking, alcohol consumption, occupation, family history of cancer, and clinical staging of the tumor were classified as poor. Conclusion: Most epidemiological variables from the HCR in the state of ES, Brazil, showed excellent completeness. It is essential to elucidate the sociodemographic and clinical variables of epidemiological importance for a better understanding of the health-disease process.

Patients with cancer undergoing chemotherapy may have different cancer symptom clusters (CSC) that negatively impact their quality of life (QoL). These symptoms can sometimes arise from the disease itself or as a result of their cancer treatment. This study aimed to: examine the feasibility of longitudinal testing of CSC pattern and QoL in a sample of adult cancer patients undergoing outpatient chemotherapy; to identify the cardiovascular risk of patients with cancer undergoing outpatient chemotherapy; and to investigate the most prevalent CSC and their impact on the QoL of these patients. A longitudinal pilot study was conducted with eleven participants with a mean age of 56.09 years (range: 27–79) diagnosed with malignant neoplasm and undergoing outpatient chemotherapy treatment were evaluated during 6 cycles of chemotherapy. The CSC, cardiovascular risk, and QoL were assessed using the MSAS, FRS, and EQ-5D-3L™, respectively. Descriptive statistical and non-parametric bivariate analyses were performed. Patients who started chemotherapy treatment generally had a low to moderate cardiovascular risk and were likely to have a family history of hypertension, acute myocardial infarction, and stroke. Cardiovascular risk was found to be correlated with patient age (Rho _s  = 0.64; P = .033). In addition, the results showed a reduction in the QoL scoring over the 6 chemotherapy sessions. Regarding the most prevalent CSC, 2 clusters were identified: the neuropsychological symptom cluster (difficulty concentrating-sadness-worry) and the fatigue-difficulty sleeping cluster. Between the first and sixth chemotherapy sessions, there was a decrease in the perception of “mild” severity (P = .004) and an increase in the perception of “severe” and “very severe” (P = .003) for all symptoms. Adequate attention to CSC should be the basis for the accurate planning of effective interventions to manage the symptoms experienced by cancer patients.

Objective: To synthesize and analyze the prevalence, composition, longitudinal stability, and predictors of cancer symptom clusters in children and adolescents undergoing chemotherapy. Method: A systematic literature review was conducted in accordance with the PRISMA 2020 guidelines. Evidence was sourced from MEDLINE/PubMed, Cochrane Library, Embase, PsycINFO, and Web of Science, as well as clinical trial registries (Clinical Trials WHO-ICTRP) and gray literature. The search was performed in February 2025, with no restrictions on publication date or language. Two independent reviewers screened and selected the studies. The methodological quality of the included studies was assessed using design-specific tools, and the findings were synthesized narratively. Results: A total of 6221 records were identified, with 12 studies meeting the inclusion criteria. These studies were published between 2010 and 2024 in the United States, Brazil, China, and Turkey. Cancer symptom clusters in children and adolescents followed well-defined patterns, with the gastrointestinal, emotional, fatigue-related, somatic, and self-image clusters being the most prevalent. Conclusions: Early identification of these cancer symptom clusters is essential for guiding interprofessional teams in delivering personalized, evidence-based care to children and adolescents with cancer and their families.

This ecological time series study aimed to examine the temporal trends in the completeness of epidemiological variables from a hospital-based cancer registry (HbCR) of a reference center for pediatric oncology in Brazil from 2010 to 2016. Completeness categories were based on the percentage of missing data, with the categories excellent (50%). Descriptive and bivariate analyses were performed using R.4.1.0; a Mann–Kendall trend test was performed to examine the temporal trends. Variables with the highest incompleteness included race/color (17.24% in 2016), level of education (51.40% in 2015), TNM (56.88% in 2012), disease status at the end of the first treatment (12.09% in 2013), cancer family history (79.12% in 2013), history of alcoholic consumption (39.25% in 2015), history of tobacco consumption (38.32% in 2015), and type of admission clinic (10.28% in 2015). Nevertheless, most variables achieved 100% completeness and were classified as excellent across the time series. A significant trend was observed for race/color, TNM, and history of tobacco consumption. While most variables maintained excellent completeness, the increasing incompleteness trend in race/color and decreasing trend in TNM underscore the importance of reliable and complete HbCRs for personalized cancer care, for planning public policies, and for conducting research on cancer control.