{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T19:13:10Z","timestamp":1792782790552,"version":"4.5.0"},"reference-count":23,"publisher":"Springer Science and Business Media LLC","issue":"10","license":[{"start":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T00:00:00Z","timestamp":1788825600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T00:00:00Z","timestamp":1788825600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"Universit\u00e0 degli Studi di Trieste","id":[{"id":"https:\/\/ror.org\/02n742c10","id-type":"ROR","asserted-by":"crossref"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Eur J Pediatr"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>\n                    The purpose of this study was to describe real-world pediatric palliative care (PPC) utilization and care pathways within a regional Italian health system and to compare the observed specialist PPC caseload with the expected regional need. This retrospective observational study included pediatric patients formally taken in charge by the tertiary-level PPC Hub Center at IRCCS Burlo Garofolo, Trieste, between January 2022 and December 2025. Electronic clinical records were reviewed to reconstruct demographic and clinical characteristics, technological dependency, healthcare contacts, home-based activities, territorial mobility, and expected regional PPC need. Among 159 screened patients, 91 met the inclusion criteria. Most patients were non-oncologic (\n                    <jats:italic>n<\/jats:italic>\n                    \u2009=\u200980) and showed high clinical complexity and frequent technological dependency, with 29.7% requiring more than three medical devices. Median age was 6\u00a0years (IQR 1\u201312), foreign citizens accounted for 26.4% of the cohort, and overall mortality was 29.7%. Median healthcare utilization was 61 accesses per patient (IQR 35\u201397), with broad multidisciplinary involvement across hospital, outpatient, emergency, and home-based services. Care delivery was strongly centralized toward the tertiary PPC Hub Center. Observed specialist PPC coverage was 42.3% of the estimated regional specialist need, with lower coverage in more distant Local Health Authorities.\n                  <\/jats:p>\n                  <jats:p>\n                    <jats:italic>Conclusion<\/jats:italic>\n                    :\u00a0Children receiving specialist PPC showed substantial clinical complexity, technological dependency, and intensive multidisciplinary healthcare use. Hub-centered pathways and the coverage gap support strengthening territorial capacity, proactive case identification, culturally sensitive family support, and integrated Hub-and-Spoke governance.\n                    <jats:table-wrap>\n                      <jats:table>\n                        <jats:tbody>\n                          <jats:tr>\n                            <jats:td colspan=\"2\">\n                              <jats:bold>What is Known:<\/jats:bold>\n                              \u2022\n                              <jats:italic>Children needing PPC have complex, long-term needs and high healthcare utilization.<\/jats:italic>\n                              \u2022\n                              <jats:italic>Access to specialist PPC remains uneven across Italian regions and care settings.<\/jats:italic>\n                            <\/jats:td>\n                          <\/jats:tr>\n                          <jats:tr>\n                            <jats:td colspan=\"2\">\n                              <jats:bold>What is New:<\/jats:bold>\n                              \u2022\n                              <jats:italic>This regional real-world study reconstructs longitudinal PPC pathways across hospital, home, and territorial services.<\/jats:italic>\n                              \u2022\n                              <jats:italic>Specialist PPC coverage reached 42.3% of estimated need, with marked LHA variability and hub-centered care.<\/jats:italic>\n                            <\/jats:td>\n                          <\/jats:tr>\n                        <\/jats:tbody>\n                      <\/jats:table>\n                    <\/jats:table-wrap>\n                  <\/jats:p>","DOI":"10.1007\/s00431-026-07386-4","type":"journal-article","created":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T10:18:16Z","timestamp":1788862696000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Pediatric palliative care in practice: real-world service utilization and care pathways in a regional Italian health system"],"prefix":"10.1007","volume":"185","author":[{"given":"Marco","family":"Gabrielli","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Giulia","family":"Zamagni","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sara","family":"Persello","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Valeria","family":"Tozzi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francesca","family":"Peri","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lucia","family":"De Zen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,9,8]]},"reference":[{"issue":"1","key":"7386_CR1","doi-asserted-by":"publisher","DOI":"10.1186\/s13052-024-01604-1","volume":"50","author":"F Benini","year":"2024","unstructured":"Benini F, Mercante A, Di Nunzio S, Papa S, PalliPed Working Group (2024) The specialized pediatric palliative care service in Italy: how is it working? Results of the nationwide PalliPed study. Ital J Pediatr 50(1):55. https:\/\/doi.org\/10.1186\/s13052-024-01604-1","journal-title":"Ital J Pediatr"},{"issue":"6","key":"7386_CR2","doi-asserted-by":"publisher","first-page":"e220687","DOI":"10.1001\/jamapediatrics.2022.0687","volume":"176","author":"JK Leyenaar","year":"2022","unstructured":"Leyenaar JK, Schaefer AP, Freyleue SD et al (2022) Prevalence of children with medical complexity and associations with health care utilization and in-hospital mortality. JAMA Pediatr 176(6):e220687. https:\/\/doi.org\/10.1001\/jamapediatrics.2022.0687","journal-title":"JAMA Pediatr"},{"issue":"2","key":"7386_CR3","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2025-071774","volume":"156","author":"JK Leyenaar","year":"2025","unstructured":"Leyenaar JK, Freyleue S, Arakelyan M, Schaefer AP (2025) Hospitalizations by children with medical complexity from 2009 to 2022. Pediatrics 156(2):e2025071774. https:\/\/doi.org\/10.1542\/peds.2025-071774","journal-title":"Pediatrics"},{"issue":"11","key":"7386_CR4","doi-asserted-by":"publisher","first-page":"e467","DOI":"10.1542\/hpeds.2024-007863","volume":"14","author":"NM Money","year":"2024","unstructured":"Money NM, Michelson KA, Ramgopal S (2024) Characteristics and utilization of hospitalizations among children with medical complexity. Hosp Pediatr 14(11):e467\u2013e475. https:\/\/doi.org\/10.1542\/hpeds.2024-007863","journal-title":"Hosp Pediatr"},{"issue":"6","key":"7386_CR5","doi-asserted-by":"publisher","DOI":"10.1007\/s00431-025-06227-0","volume":"184","author":"I Serrano-Pejenaute","year":"2025","unstructured":"Serrano-Pejenaute I, Astigarraga I, S\u00e1nchez P\u00e9rez \u00c1 (2025) Impact of complex chronic diseases and life-limiting condition status on paediatric hospitalization: observational study. Eur J Pediatr 184(6):378. https:\/\/doi.org\/10.1007\/s00431-025-06227-0","journal-title":"Eur J Pediatr"},{"issue":"1","key":"7386_CR6","doi-asserted-by":"publisher","DOI":"10.1186\/s13052-024-01604-1","volume":"50","author":"F Benini","year":"2024","unstructured":"Benini F, Mercante A, Di Nunzio S, Papa S (2024) The specialized pediatric palliative care service in Italy: how is it working? Results of the nationwide PalliPed study. Ital J Pediatr 50(1):55. https:\/\/doi.org\/10.1186\/s13052-024-01604-1","journal-title":"Ital J Pediatr"},{"issue":"7","key":"7386_CR7","doi-asserted-by":"publisher","first-page":"1031","DOI":"10.1089\/jpm.2021.0175","volume":"25","author":"DL Lysecki","year":"2022","unstructured":"Lysecki DL, Gupta S, Rapoport A et al (2022) Children\u2019s health care utilization and cost in the last year of life: a cohort comparison with and without regional specialist pediatric palliative care. J Palliat Med 25(7):1031\u20131040. https:\/\/doi.org\/10.1089\/jpm.2021.0175","journal-title":"J Palliat Med"},{"key":"7386_CR8","unstructured":"Italia (2010) Legge 15 marzo 2010, n. 38. Disposizioni per garantire l\u2019accesso alle cure palliative e alla terapia deldolore. Gazzetta Uffi ciale 65. https:\/\/www.gazzettaufficiale.it\/gunewsletter\/dettaglio.jsp?service=1&datagu=2010-03-19&task=dettaglio&numgu=65&redaz=010G0056&tmstp=1269600292070"},{"issue":"12","key":"7386_CR9","doi-asserted-by":"publisher","first-page":"e185","DOI":"10.1097\/PEC.0000000000003463","volume":"41","author":"A Zanin","year":"2025","unstructured":"Zanin A, La Piana C, Brigiari G et al (2025) Retrospective evaluation of pediatric emergency department visits of children with medical complexity in a tertiary care center in Italy. Pediatr Emerg Care 41(12):e185\u2013e191. https:\/\/doi.org\/10.1097\/PEC.0000000000003463","journal-title":"Pediatr Emerg Care"},{"issue":"1","key":"7386_CR10","doi-asserted-by":"publisher","DOI":"10.1186\/s12904-024-01532-1","volume":"23","author":"M Schiavon","year":"2024","unstructured":"Schiavon M, Lazzarin P, Agosto C et al (2024) A 15-year experience in pediatric palliative care: a retrospective hospital-based study. BMC Palliat Care 23(1):202. https:\/\/doi.org\/10.1186\/s12904-024-01532-1","journal-title":"BMC Palliat Care"},{"issue":"1","key":"7386_CR11","doi-asserted-by":"publisher","DOI":"10.1186\/s12913-024-11235-1","volume":"24","author":"C Koob","year":"2024","unstructured":"Koob C, Griffin SF, Stuenkel M, Cartmell K, Rennert L, Sease K (2024) Bridging the gaps in pediatric complex healthcare: the case for home nursing care among children with medical complexity. BMC Health Serv Res 24(1):814. https:\/\/doi.org\/10.1186\/s12913-024-11235-1","journal-title":"BMC Health Serv Res"},{"issue":"1","key":"7386_CR12","doi-asserted-by":"publisher","first-page":"90","DOI":"10.1002\/jhm.12948","volume":"18","author":"LP Chen","year":"2023","unstructured":"Chen LP, Gerber DM, Coller RJ (2023) Admitting what is needed: how the health system and society can reduce hospitalizations for children with medical complexity. J Hosp Med 18(1):90\u201394. https:\/\/doi.org\/10.1002\/jhm.12948","journal-title":"J Hosp Med"},{"issue":"2","key":"7386_CR13","doi-asserted-by":"publisher","first-page":"205","DOI":"10.1089\/jpm.2020.0148","volume":"24","author":"P Lazzarin","year":"2021","unstructured":"Lazzarin P, Giacomelli L, Terrenato I, Benini F, ACCAPED Study Group (2021) A tool for the evaluation of clinical needs and eligibility to pediatric palliative care: the validation of the ACCAPED scale. J Palliat Med 24(2):205\u2013210. https:\/\/doi.org\/10.1089\/jpm.2020.0148","journal-title":"J Palliat Med"},{"issue":"9","key":"7386_CR14","doi-asserted-by":"publisher","first-page":"4139","DOI":"10.1007\/s00431-024-05649-6","volume":"183","author":"L De Zen","year":"2024","unstructured":"De Zen L, Peri F, Catalano I, Gabrielli M, Rizzi B, Valente EP, Zamagni G, Recchia A, Visconti G, Pellegatta F (2024) Translation and cultural adaptation of the Italian version of the Paediatric Palliative Screening Scale. Eur J Pediatr 183(9):4139\u20134143. https:\/\/doi.org\/10.1007\/s00431-024-05649-6","journal-title":"Eur J Pediatr"},{"key":"7386_CR15","unstructured":"Together for Short Lives (2018) A guide to children\u2019s palliative care (4th ed.). Together for short lives. https:\/\/www.togetherforshortlives.org.uk\/app\/uploads\/2018\/03\/TfSL-A-Guide-to-Children%E2%80%99s-Palliative-Care-Fourth-Edition-FINAL-SINGLE-PAGES.pdf"},{"issue":"16","key":"7386_CR16","doi-asserted-by":"publisher","first-page":"e492","DOI":"10.1200\/JCO.2011.35.5602","volume":"29","author":"AM Geiger","year":"2021","unstructured":"Geiger AM, Castellino SM (2021) Delineating the age ranges used to define adolescents and young adults. J Clin Oncol 29(16):e492\u2013e493. https:\/\/doi.org\/10.1200\/JCO.2011.35.5602","journal-title":"J Clin Oncol"},{"issue":"3","key":"7386_CR17","doi-asserted-by":"publisher","first-page":"223","DOI":"10.1016\/S2352-4642(18)30022-1","volume":"2","author":"SM Sawyer","year":"2018","unstructured":"Sawyer SM, Azzopardi PS, Wickremarathne D, Patton GC (2018) The age of adolescence. Lancet Child Adolesc Health 2(3):223\u2013228. https:\/\/doi.org\/10.1016\/S2352-4642(18)30022-1","journal-title":"Lancet Child Adolesc Health"},{"key":"7386_CR18","unstructured":"A guide to children\u2019s palliative care (fourth edition) is published by Together for Short Lives, England;\u00a0https:\/\/www.togetherforshortlives.org.uk\/app\/uploads\/2018\/03\/TfSL-A-Guide-to-Children%E2%80%99s-Palliative-Care-Fourth-Edition-FINAL-SINGLE-PAGES.pdf"},{"issue":"1","key":"7386_CR19","doi-asserted-by":"publisher","DOI":"10.1186\/s13052-020-00952-y","volume":"47","author":"F Benini","year":"2021","unstructured":"Benini F, Bellentani M, Reali L et al (2021) An estimation of the number of children requiring pediatric palliative care in Italy. Ital J Pediatr 47(1):4. https:\/\/doi.org\/10.1186\/s13052-020-00952-y","journal-title":"Ital J Pediatr"},{"key":"7386_CR20","unstructured":"Istituto Nazionale di Statistica (Istat)\u00a0Popolazione residente al 1\u00b0 gennaio - indicatori demografici. Statistiche demografiche. https:\/\/demo.istat.it\/app\/?l=it&a=2025&i=POS Accessed August 13, 2026"},{"key":"7386_CR21","unstructured":"Authorisation no. 9\/2014 - General authorisation to process personal data for scientific research purposes published in Italy\u2019s Official Journal No. 301 of 30 December 2014; https:\/\/www.garanteprivacy.it\/home\/docweb\/-\/docweb-display\/docweb\/3786078"},{"issue":"6","key":"7386_CR22","doi-asserted-by":"publisher","first-page":"2218","DOI":"10.1007\/s40615-021-01161-x","volume":"9","author":"S Nageswaran","year":"2022","unstructured":"Nageswaran S, Ellis MB, Beveridge MS (2022) Communication challenges faced by Spanish-speaking caregivers of children with medical complexity: a qualitative study. J Racial Ethn Health Disparities 9(6):2218\u20132226. https:\/\/doi.org\/10.1007\/s40615-021-01161-x","journal-title":"J Racial Ethn Health Disparities"},{"issue":"4","key":"7386_CR23","doi-asserted-by":"publisher","first-page":"216","DOI":"10.1093\/pch\/pxad040","volume":"29","author":"C Belza","year":"2023","unstructured":"Belza C, Cohen E, Orkin J et al (2023) Out-of-pocket expenses reported by families of children with medical complexity. Paediatr Child Health 29(4):216\u2013223. https:\/\/doi.org\/10.1093\/pch\/pxad040","journal-title":"Paediatr Child Health"}],"container-title":["European Journal of Pediatrics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00431-026-07386-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s00431-026-07386-4","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00431-026-07386-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,13]],"date-time":"2026-10-13T19:36:52Z","timestamp":1791920212000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s00431-026-07386-4"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,9,8]]},"references-count":23,"journal-issue":{"issue":"10","published-online":{"date-parts":[[2026,10]]}},"alternative-id":["7386"],"URL":"https:\/\/doi.org\/10.1007\/s00431-026-07386-4","relation":{},"ISSN":["1432-1076"],"issn-type":[{"value":"1432-1076","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,9,8]]},"assertion":[{"value":"29 June 2026","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"19 August 2026","order":2,"name":"revised","label":"Revised","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"28 August 2026","order":3,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"8 September 2026","order":4,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"The authors declare no competing interests.","order":1,"name":"Ethics","label":"Competing interests","group":{"name":"EthicsHeading","label":"Declarations"}}],"article-number":"728"}}