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Epidemiological Assessment of a Pediatric Palliative Care Clinic at a Brazilian Quaternary Hospital: 20 Years of Experience.
Spolador, Gustavo Marquezani; Bastos, Fernanda; Polastrini, Rita Tiziana Verardo; Zoboli, Ivete; Henrique, Ana Cristina; Vieira Filho, Joaquim Pinheiro; da Silveira, Mariana Ribeiro Marcondes; Freitas, Elaine; do Nascimento, Andréa Gislene; de Macedo Barbosa, Silvia Maria.
Afiliación
  • Spolador GM; Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil.
  • Bastos F; Fleury Genomics Laboratory, Sao Paulo, Brazil.
  • Polastrini RTV; Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil.
  • Zoboli I; Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil.
  • Henrique AC; Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil.
  • Vieira Filho JP; Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil.
  • da Silveira MRM; Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil.
  • Freitas E; A. C. Camargo Cancer Center, Sao Paulo, Brazil.
  • do Nascimento AG; Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil.
  • de Macedo Barbosa SM; Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil.
J Palliat Med ; 27(4): 503-507, 2024 04.
Article en En | MEDLINE | ID: mdl-38387013
ABSTRACT

Background:

The pediatric palliative care (PPC) sets up an interdisciplinary approach of chronic complex diseases throughout birth to adolescence. It encompasses countless contrasts in development and diagnosis scopes, which make this area a challenge to nonpediatric practitioners.

Objective:

We sought to assess the most prevalent diseases in follow-up of the PPC team.

Methods:

We analyzed the medical records of PPC clinic during the years 2001 and 2021 and the diagnosis of outpatients. We established a parallel with the world scientific literature concerning the epidemiology of PPC.

Results:

The most prevalent diseases were epidermolysis bullosa (36.9%), followed by neurological Inherited Errors of Metabolism (IEM) diseases (19.0%), IEM diseases (14.3%), dysmorphological and chromosomal disorders (8.5%), skeletal disorders mainly osteogenesis imperfecta (6.9%), and liver transplantation conditions (5.5%) (p < 0.001). The less frequent conditions were external causes, such as neonatal insults or traffic accidents (2.8%), cancer (1.7%), congenital cardiopathies (1.4%), congenital infectious diseases (1.1%), gastrointestinal and hepatic conditions (0.8%), and rheumatological conditions (0.3%). The patients were older at diagnosis (6.9 years) and at PPC referral (13.2 years) than patients with epidermolysis bullosa and skeletal disorders and dysmorphological and chromosomal disorders were younger on referral.

Conclusion:

There are a lot of complex chronic conditions which could benefit from palliative care in pediatric setting. However, epidemiological and symptomatological assessment of the health service is necessary to provide an appropriate care to the country's reality.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Epidermólisis Ampollosa / Trastornos de los Cromosomas Límite: Adolescent / Child / Humans / Newborn País/Región como asunto: America do sul / Brasil Idioma: En Revista: J Palliat Med Asunto de la revista: SERVICOS DE SAUDE Año: 2024 Tipo del documento: Article País de afiliación: Brasil Pais de publicación: Estados Unidos
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Epidermólisis Ampollosa / Trastornos de los Cromosomas Límite: Adolescent / Child / Humans / Newborn País/Región como asunto: America do sul / Brasil Idioma: En Revista: J Palliat Med Asunto de la revista: SERVICOS DE SAUDE Año: 2024 Tipo del documento: Article País de afiliación: Brasil Pais de publicación: Estados Unidos