• J Palliat Med · Apr 2024

    Epidemiological Assessment of a Pediatric Palliative Care Clinic at a Brazilian Quaternary Hospital: 20 Years of Experience.

    • Gustavo Marquezani Spolador, Fernanda Bastos, Rita Tiziana Verardo Polastrini, Ivete Zoboli, Ana Cristina Henrique, Joaquim Pinheiro Vieira Filho, Mariana Ribeiro Marcondes da Silveira, Elaine Freitas, Andréa Gislene do Nascimento, and de Macedo BarbosaSilvia MariaSMDepartment of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil..
    • Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil.
    • J Palliat Med. 2024 Apr 1; 27 (4): 503507503-507.

    AbstractBackground: 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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