{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T17:23:10Z","timestamp":1777915390018,"version":"3.51.4"},"reference-count":9,"publisher":"SAGE Publications","issue":"4","license":[{"start":{"date-parts":[[2024,4,1]],"date-time":"2024-04-01T00:00:00Z","timestamp":1711929600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Palliative Medicine"],"published-print":{"date-parts":[[2024,4]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>We sought to assess the most prevalent diseases in follow-up of the PPC team.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>\n                      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%) (\n                      <jats:italic toggle=\"yes\">p<\/jats:italic>\n                      \u2009&lt;\u20090.001). 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.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1089\/jpm.2023.0305","type":"journal-article","created":{"date-parts":[[2024,2,22]],"date-time":"2024-02-22T16:35:45Z","timestamp":1708619745000},"page":"503-507","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":3,"title":["Epidemiological Assessment of a Pediatric Palliative Care Clinic at a Brazilian Quaternary Hospital: 20 Years of Experience"],"prefix":"10.1177","volume":"27","author":[{"given":"Gustavo Marquezani","family":"Spolador","sequence":"first","affiliation":[{"name":"Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil."},{"name":"Fleury Genomics Laboratory, Sao Paulo, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-2037-8720","authenticated-orcid":false,"given":"Fernanda","family":"Bastos","sequence":"additional","affiliation":[{"name":"Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rita Tiziana Verardo","family":"Polastrini","sequence":"additional","affiliation":[{"name":"Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ivete","family":"Zoboli","sequence":"additional","affiliation":[{"name":"Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ana Cristina","family":"Henrique","sequence":"additional","affiliation":[{"name":"Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joaquim Pinheiro","family":"Vieira Filho","sequence":"additional","affiliation":[{"name":"Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil."},{"name":"A. C. Camargo Cancer Center, Sao Paulo, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mariana Ribeiro Marcondes","family":"da Silveira","sequence":"additional","affiliation":[{"name":"Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elaine","family":"Freitas","sequence":"additional","affiliation":[{"name":"Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil."},{"name":"Department of Social Work and Social Care, and University of Sao Paulo, Sao Paulo, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andr\u00e9a Gislene","family":"do Nascimento","sequence":"additional","affiliation":[{"name":"Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil."},{"name":"Department of Nutrition and Dietetics, University of Sao Paulo, Sao Paulo, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Silvia Maria","family":"de Macedo Barbosa","sequence":"additional","affiliation":[{"name":"Department of Pain and Pediatric Palliative Care, University of Sao Paulo, Sao Paulo, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2024,4,2]]},"reference":[{"key":"e_1_3_5_2_2","doi-asserted-by":"publisher","DOI":"10.1016\/B978-1-4377-0262-0.00002-5"},{"key":"e_1_3_5_3_2","doi-asserted-by":"publisher","DOI":"10.1186\/1824-7288-34-4"},{"key":"e_1_3_5_4_2","unstructured":"Global Atlas of Palliative Care at the End of Life. WHO: Geneva; 2020. Available from: http:\/\/www.thewhpca.org\/resources\/item\/global-atlas-of-palliative-care-2nd-ed-2020 [Last accessed: May 5 2023]."},{"key":"e_1_3_5_5_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2010-3225"},{"key":"e_1_3_5_6_2","unstructured":"Integrating Palliative Care and Symptom Relief into Paediatrics: A WHO Guide for Health Care Planners. World Health Organization: Geneva; 2018."},{"key":"e_1_3_5_7_2","doi-asserted-by":"publisher","DOI":"10.1590\/S1415-47572010005000020"},{"key":"e_1_3_5_8_2","doi-asserted-by":"publisher","DOI":"10.1159\/000507336"},{"key":"e_1_3_5_9_2","doi-asserted-by":"publisher","DOI":"10.17219\/acem\/134166"},{"key":"e_1_3_5_10_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2020.08.033"}],"container-title":["Journal of Palliative Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1089\/jpm.2023.0305","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1089\/jpm.2023.0305","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1089\/jpm.2023.0305","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T17:18:57Z","timestamp":1777655937000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1089\/jpm.2023.0305"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,4]]},"references-count":9,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2024,4]]}},"alternative-id":["10.1089\/jpm.2023.0305"],"URL":"https:\/\/doi.org\/10.1089\/jpm.2023.0305","relation":{},"ISSN":["1096-6218","1557-7740"],"issn-type":[{"value":"1096-6218","type":"print"},{"value":"1557-7740","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,4]]}}}