Exploring the Brazilian pediatric palliative care network: a quantitative analysis of a survey data

Abstract

Objective: The aim of this study was to identify the characteristics of services in Brazil that compound the Brazilian Pediatric Palliative Care (PPC) Network. Methods: An online survey was conducted among representatives from PPC services. A total of 90 services from Brazil completed the online survey and answered a questionnaire about the service’s characterization, health professionals working in PPC, access to opioid prescription and education, and research in PPC. Results: In total, 80 services (88.9%) were created after 2010, 52 (57.9%) were in the southeast region, 56 (62.2%) were in public hospitals, 63 (70%) had up to 100 beds, and 57 (63.3%) were at the tertiary level. Notably, 88 (97.8%) had a physician in the team and 68 (75.5%) dedicated part-time to PPC. Also, 33 (36.7%) revealed concern with the care of health professionals and 36 (40%) reported difficulty or no access to opioid prescription. Research studies were reported to be conducted in 29 (32.2%) services. Conclusions: This mapping points out to a concentration of PPC services in the southeast region, with part-time professional dedication, and the need to improve professionals’ care. Difficulty in opioid access was reported. It is necessary to extend PPC participation to other Brazilian regions, increase time dedicated to PPC, improve professionals’ care and improve access to opioid prescription.

Scope of services provided to childhood cancer patients by the Brazilian Pediatric Palliative Care Network

“…The distribution of services that cover oncology and those that do not, are similar in the different regions of Brazil. A recently published article demonstrated that there are very important regional differences in the number of PPC services in the country, which does not mean that there are no children in need of this attention in these locations ( 4 ).…”

“…A child’s suffering affects the entire family, as well as the society that surrounds them ( 3 ). In this scenario, Pediatric Palliative Care (PPC) emerges as an integral form of assistance for these patients and their families ( 4 ). PPC implies early identification of the degree of serious disease involved, evaluation, and adequate treatment, improving quality of life, promoting dignity and comfort, without accelerating or delaying death, and may even positively influence the course of the disease, an essential aspect for the prognosis of the pediatric patient ( 5 ).…”

“…Brazil is a developing and Upper Middle Income country, categorized by the World Bank, but, mainly, it is a country of large territorial extension, with multiple cultures, accompanied by financial disparities ( 3 ). Therefore, an individualized vision for the realities of children with oncological diseases who have indications that PPC is necessary, which is a great challenge ( 4 ).…”

“…Palliative Care services are those health services (such as hospitals and clinics) that provide assistance to children who need this area. In 2019, in Brazil, of the 191 Palliative Care services evaluated, only 40.3% were qualified for the care of children and adolescents ( 4 , 6 ): although more than 40% of palliative care services in Brazil served children and adolescents, it was not known exactly what type of assistance was provided. As for public policies in Brazil, some states have already published their own normative on the topic ( 7 ).…”

Pediatric palliative care and childhood neurosurgery: reflections based on a quantitative analysis of a survey data

“…(1,2) PPC requires early identification and assessment, in addition to adequate treatment, to improve quality of life, promote dignity and comfort without accelerating or delaying death, and may even positively influence the course of the disease, an essential aspect for the prognosis of pediatric patients. 3 For Pediatric Palliative Care to provide adequate assistance to patients, a multidisciplinary team is required,(4) not only in different undergraduate courses, but also within the medical field itself. (5) According to the National Medical Residency Commission (NMRC), in its Resolution Number 9, of April 8, 2019, which provides for the Competency Matrix of Medical Residency Programs in Neurosurgery, it is the resident's responsibility, at the end of the first year, to know "identify the patient's level of consciousness using the Glasgow Coma Scale, determine the conditions of imminent risk of death and adopt appropriate resuscitation and support measures".…”