{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,12]],"date-time":"2026-03-12T20:22:32Z","timestamp":1773346952476,"version":"3.50.1"},"reference-count":34,"publisher":"MDPI AG","issue":"3","license":[{"start":{"date-parts":[[2026,3,11]],"date-time":"2026-03-11T00:00:00Z","timestamp":1773187200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Children"],"abstract":"<jats:p>Objectives: To report the outcomes of a population of fetuses and neonates with life-limiting (LL) or life-threatening (LT) diagnoses leading to adverse prognoses cared for by a service of perinatal palliative care (PPC), the Percorso Giacomo (PG). Study design: This is a single center retrospective cohort study of all fetuses and neonates prenatally or postnatally diagnosed with LL or LT conditions whose families opted to continue the pregnancy at IRCCS Policlinico di Sant\u2019Orsola in Bologna, Italy, from 2013 to 2025. Results: There were 83 fetuses and\/or neonates including 64 diagnosed prenatally and 19 postnatally with annual significant increments in number. All families encountered the PG team. Overall, the cohort demonstrated a very high cumulative rate of comfort care plan (90%) with high rate of redirection of goals of care from intensive to palliative. Conclusions: PG showed a significant growth over 13 years suggesting the strong need of a service of PPC. The continuity of care provided by PG facilitated parental decision-making process towards redirection of goals of care. The outcomes observed provided valuable insights related to the wide range of prognoses for each diagnosis that will enable more informed counseling in the future.<\/jats:p>","DOI":"10.3390\/children13030389","type":"journal-article","created":{"date-parts":[[2026,3,11]],"date-time":"2026-03-11T14:43:18Z","timestamp":1773240198000},"page":"389","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["The First 13 Years of \u201cPercorso Giacomo\u201d: Patients\u2019 Outcomes"],"prefix":"10.3390","volume":"13","author":[{"given":"Francesca","family":"Catapano","sequence":"first","affiliation":[{"name":"Department of Medical and Surgical Sciences (DIMEC), University of Bologna, 40138 Bologna, Italy"},{"name":"Neonatal Intensive Care Unit, IRCCS Azienda Ospedaliero-Universitaria di Bologna (A.O.U.BO), 40138 Bologna, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Giacomo","family":"Sperti","sequence":"additional","affiliation":[{"name":"Neonatal Intensive Care Unit, IRCCS Azienda Ospedaliero-Universitaria di Bologna (A.O.U.BO), 40138 Bologna, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maria","family":"Bisulli","sequence":"additional","affiliation":[{"name":"Department of Gynecology, IRCCS Azienda Ospedaliero-Universitaria di Bologna (A.O.U.BO), 40138 Bologna, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Luigi Tommaso","family":"Corvaglia","sequence":"additional","affiliation":[{"name":"Neonatal Intensive Care Unit, IRCCS Azienda Ospedaliero-Universitaria di Bologna (A.O.U.BO), 40138 Bologna, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Chiara","family":"Locatelli","sequence":"additional","affiliation":[{"name":"Neonatal Intensive Care Unit, IRCCS Azienda Ospedaliero-Universitaria di Bologna (A.O.U.BO), 40138 Bologna, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elvira","family":"Parravicini","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Columbia University Irving Medical Center, New York, NY 10032, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2026,3,11]]},"reference":[{"key":"ref_1","unstructured":"European Platform on Rare Disease Registration (2025, June 02). Prevalence Charts and Tables\u2014EUROCAT Data. Available online: https:\/\/eu-rd-platform.jrc.ec.europa.eu\/eurocat\/eurocat-data\/prevalence_en."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"329","DOI":"10.1136\/bmjspcare-2019-001849","article-title":"Perinatal palliative care: A dedicated care pathway","volume":"11","author":"Rusalen","year":"2021","journal-title":"BMJ Support. Palliat. Care"},{"key":"ref_3","doi-asserted-by":"crossref","unstructured":"McCarthy, F.T., Kenis, A., and Parravicini, E. (2023). Perinatal palliative care: Focus on comfort. Front. Pediatr., 11.","DOI":"10.3389\/fped.2023.1258285"},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"135","DOI":"10.1097\/MOP.0000000000000464","article-title":"Neonatal palliative care","volume":"29","author":"Parravicini","year":"2017","journal-title":"Curr. Opin. Pediatr."},{"key":"ref_5","doi-asserted-by":"crossref","unstructured":"(2019). Perinatal Palliative Care: ACOG COMMITTEE OPINION, Number 786. Obstet. Gynecol., 134, e84\u2013e89.","DOI":"10.1097\/AOG.0000000000003425"},{"key":"ref_6","doi-asserted-by":"crossref","unstructured":"Carter, B.S. (2018). Pediatric Palliative Care in Infants and Neonates. Children, 5.","DOI":"10.3390\/children5020021"},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"151526","DOI":"10.1016\/j.semperi.2021.151526","article-title":"An ethical rationale for perinatal palliative care","volume":"46","author":"Carter","year":"2022","journal-title":"Semin. Perinatol."},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"2231","DOI":"10.1542\/peds.2006-2277","article-title":"Prevention and management of pain in the neonate: An update","volume":"118","author":"Batton","year":"2006","journal-title":"Pediatrics"},{"key":"ref_9","unstructured":"Societ\u00e0 Italiana di Neonatologia, and Gruppo di Studio di Analgesia e Sedazione nel Neonato (2016). Linee Guida per la Prevenzione ed il Trattamento del Dolore Nel Neonato, Biomedia."},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"F567","DOI":"10.1136\/archdischild-2018-316327","article-title":"Perinatal palliative care: A national survey in Italy","volume":"104","author":"Cavicchiolo","year":"2019","journal-title":"Arch. Dis. Child. Fetal Neonatal Ed."},{"key":"ref_11","doi-asserted-by":"crossref","unstructured":"Locatelli, C., Corvaglia, L., Simonazzi, G., Bisulli, M., Paolini, L., and Faldella, G. (2020). \u201cPercorso Giacomo\u201d: An Italian Innovative Service of Perinatal Palliative Care. Front. Pediatr., 8.","DOI":"10.3389\/fped.2020.589559"},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"115","DOI":"10.1038\/s41390-024-03366-2","article-title":"Evaluation of a perinatal palliative care program by SWOT analysis","volume":"97","author":"Catapano","year":"2025","journal-title":"Pediatr. Res."},{"key":"ref_13","unstructured":"Health, U. (2021, July 01). Health Facts for Patients: Neonatal Infant Pain Scales (NIPS). Available online: https:\/\/patient.uwhealth.org\/healthfacts\/7711."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"322","DOI":"10.3345\/kjp.2017.05939","article-title":"Evaluation of prolonged pain in preterm infants with pneumothorax using heart rate variability analysis and EDIN (\u00c9chelle Douleur Inconfort Nouveau-N\u00e9, neonatal pain and discomfort scale) scores","volume":"61","author":"Buyuktiryaki","year":"2018","journal-title":"Korean J. Pediatr."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"889","DOI":"10.1038\/s41372-023-01664-x","article-title":"Fetal outcomes and continuity in perinatal palliative care patients at a quaternary care pediatric hospital","volume":"43","author":"Farmer","year":"2023","journal-title":"J. Perinatol."},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"864","DOI":"10.1111\/jnu.12866","article-title":"The role of children\u2019s hospices in perinatal palliative care and advance care planning: The results of a national British survey","volume":"55","author":"Tatterton","year":"2023","journal-title":"J. Nurs. Scholarsh."},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"1379","DOI":"10.1007\/s10995-025-04162-y","article-title":"Improving Perinatal Palliative Care in the Communities: A Regional Population-Based Study","volume":"29","author":"Takashima","year":"2025","journal-title":"Matern. Child Health J."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"752","DOI":"10.1111\/1471-0528.16976","article-title":"The role of perinatal palliative care following prenatal diagnosis of major, incurable fetal anomalies: A multicentre prospective cohort study","volume":"129","author":"Roth","year":"2022","journal-title":"Bjog"},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"F56","DOI":"10.1136\/adc.2005.092122","article-title":"Palliative care for prenatally diagnosed lethal fetal abnormality","volume":"92","author":"Breeze","year":"2007","journal-title":"Arch. Dis. Child. Fetal Neonatal Ed."},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"1901","DOI":"10.1007\/s10995-017-2305-0","article-title":"Severe Fetal Abnormality and Outcomes of Continued Pregnancies: A French Multicenter Retrospective Study","volume":"21","author":"Bourdens","year":"2017","journal-title":"Matern. Child Health J."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"731","DOI":"10.1038\/jp.2013.38","article-title":"Neonatologists\u2019 perspectives of palliative and end-of-life care in neonatal intensive care units","volume":"33","author":"Cortezzo","year":"2013","journal-title":"J. Perinatol."},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"1802","DOI":"10.1038\/s41372-020-0714-1","article-title":"Neonatal palliative care: Perception differences between providers","volume":"40","author":"Niehaus","year":"2020","journal-title":"J. Perinatol."},{"key":"ref_23","doi-asserted-by":"crossref","unstructured":"Korzeniewska-Eksterowicz, A., Moczulska, H., Grzesiak, M., and Kaczmarek, P. (2025). Outcomes of delivery in patients with diagnosed life-limiting fetal condition and evaluation of perinatal palliative care program: A retrospective review of palliative care service over 7 years. BMC Palliat. Care, 24.","DOI":"10.1186\/s12904-025-01671-z"},{"key":"ref_24","doi-asserted-by":"crossref","first-page":"393","DOI":"10.1089\/jpm.2022.0172","article-title":"Perinatal Palliative Care: Additional Costs of an Interprofessional Service and Outcome of Pregnancies in a Cohort of 115 Referrals","volume":"26","author":"Buchholtz","year":"2023","journal-title":"J. Palliat. Med."},{"key":"ref_25","doi-asserted-by":"crossref","unstructured":"Bertaud, S., Brightley, G., Crowley, N., Craig, F., and Wilkinson, D. (2023). Specialist perinatal palliative care: A retrospective review of antenatal referrals to a children\u2019s palliative care service over 14\u2009years. BMC Palliat. Care, 22.","DOI":"10.1186\/s12904-023-01302-5"},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"e11","DOI":"10.1093\/pch\/pxz089","article-title":"Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review","volume":"26","author":"Doherty","year":"2021","journal-title":"Paediatr. Child Health"},{"key":"ref_27","unstructured":"American College of Obstetricians and Gynecologists (2025, June 02). Abortion and Perinatal Palliative Care. Available online: https:\/\/www.acog.org\/advocacy\/facts-are-important\/abortion-and-perinatal-palliative-care."},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"101","DOI":"10.1089\/jpm.2022.0076","article-title":"Infant Maternal Perinatal Advanced Care Team: A Pilot Collaboration for Families Facing a Life-Threatening Fetal Diagnosis","volume":"26","author":"Lord","year":"2023","journal-title":"J. Palliat. Med."},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"310","DOI":"10.1089\/jpm.2018.0303","article-title":"Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care","volume":"22","author":"Kamrath","year":"2019","journal-title":"J. Palliat. Med."},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"611","DOI":"10.1016\/j.jogn.2016.07.002","article-title":"Perinatal Palliative Care","volume":"45","author":"Limbo","year":"2016","journal-title":"J. Obstet. Gynecol. Neonatal Nurs."},{"key":"ref_31","doi-asserted-by":"crossref","first-page":"420","DOI":"10.1001\/jama.2016.9819","article-title":"Survival and Surgical Interventions for Children With Trisomy 13 and 18","volume":"316","author":"Nelson","year":"2016","journal-title":"JAMA"},{"key":"ref_32","doi-asserted-by":"crossref","first-page":"97","DOI":"10.1258\/jms.2010.010050","article-title":"EUROCAT website data on prenatal detection rates of congenital anomalies","volume":"17","author":"Garne","year":"2010","journal-title":"J. Med. Screen."},{"key":"ref_33","doi-asserted-by":"crossref","first-page":"1684","DOI":"10.1089\/jpm.2018.0431","article-title":"National Consensus Project Clinical Practice Guidelines for Quality Palliative Care Guidelines, 4th Edition","volume":"21","author":"Ferrell","year":"2018","journal-title":"J. Palliat. Med."},{"key":"ref_34","doi-asserted-by":"crossref","unstructured":"Cortezzo, D.E., Tolusso, L.K., and Swarr, D.T. (2022). Perinatal Outcomes of Fetuses and Infants Diagnosed with Trisomy 13 or Trisomy 18. J. Pediatr., 247.","DOI":"10.1101\/2021.10.08.21264249"}],"container-title":["Children"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2227-9067\/13\/3\/389\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,3,12]],"date-time":"2026-03-12T10:27:36Z","timestamp":1773311256000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2227-9067\/13\/3\/389"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,3,11]]},"references-count":34,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2026,3]]}},"alternative-id":["children13030389"],"URL":"https:\/\/doi.org\/10.3390\/children13030389","relation":{},"ISSN":["2227-9067"],"issn-type":[{"value":"2227-9067","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,3,11]]}}}