{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,13]],"date-time":"2026-04-13T07:58:19Z","timestamp":1776067099403,"version":"3.50.1"},"reference-count":35,"publisher":"Oxford University Press (OUP)","issue":"8","license":[{"start":{"date-parts":[[2025,7,28]],"date-time":"2025-07-28T00:00:00Z","timestamp":1753660800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,12,20]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>The number of Canadian children living with serious illness is increasing. Access to specialist paediatric palliative care is recognized as essential for these children, their families, and their care providers, and yet programs remain under-resourced or non-existent in much of Canada. Health services planning requires current data. This study examined the initial experience of a specialist program established in 2015 at a tertiary paediatric centre in Canada.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A prospective database study of referred patients was conducted from 2015 to 2023 (prenatal referrals were first accepted in 2021). Data were collected at referral, consult, and discharge\/death\/end of pregnancy. Program clinician growth was tracked. The analysis included descriptive statistics and a Kaplan\u2013Meier survival curve.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The program received 650 unique paediatric referrals plus 55 prenatal referrals. The number of patients receiving care annually quadrupled over the course of the study. Two-hundred and twenty-seven children died: 99% with goal-concordant care at end-of-life and most frequently in hospital, although death at home was increasingly common. A rapid increase in program resources was required to meet care needs per modern standards of care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>This study demonstrates that a new paediatric palliative care program was met with demand akin to existing established comparator programs. These results are congruent with the increase in prevalence of children with serious illness and the evolution of care standards to incorporate specialist care provision. These findings can help advocacy and resource planning for modernizing Canada\u2019s paediatric palliative care infrastructure.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/pch\/pxaf060","type":"journal-article","created":{"date-parts":[[2025,6,28]],"date-time":"2025-06-28T07:53:30Z","timestamp":1751097210000},"page":"723-730","source":"Crossref","is-referenced-by-count":1,"title":["Specialist paediatric palliative care program development in the standard-of-care era"],"prefix":"10.1093","volume":"30","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6059-0052","authenticated-orcid":false,"given":"David L","family":"Lysecki","sequence":"first","affiliation":[{"name":"Department of Pediatrics, McMaster University, Hamilton , Ontario ,","place":["Canada"]},{"name":"McMaster Children\u2019s Hospital, Hamilton Health Sciences , Hamilton, Ontario ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer","family":"Callen","sequence":"additional","affiliation":[{"name":"McMaster Children\u2019s Hospital, Hamilton Health Sciences , Hamilton, Ontario ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0001-0603-1874","authenticated-orcid":false,"given":"Joanna","family":"Humphreys","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, McMaster University, Hamilton , Ontario ,","place":["Canada"]},{"name":"McMaster Children\u2019s Hospital, Hamilton Health Sciences , Hamilton, Ontario ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katherine","family":"Sutherland","sequence":"additional","affiliation":[{"name":"McMaster Children\u2019s Hospital, Hamilton Health Sciences , Hamilton, Ontario ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Cindy","family":"van Halderen","sequence":"additional","affiliation":[{"name":"McMaster Children\u2019s Hospital, Hamilton Health Sciences , Hamilton, Ontario ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sarah","family":"Van Meer","sequence":"additional","affiliation":[{"name":"McMaster Children\u2019s Hospital, Hamilton Health Sciences , Hamilton, Ontario ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8066-2383","authenticated-orcid":false,"given":"Gregorio","family":"Zuniga-Villanueva","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, McMaster University, Hamilton , Ontario ,","place":["Canada"]},{"name":"McMaster Children\u2019s Hospital, Hamilton Health Sciences , Hamilton, Ontario ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[2025,7,28]]},"reference":[{"issue":"S2","key":"2025122013570154500_CIT0001","doi-asserted-by":"publisher","first-page":"S7","DOI":"10.1089\/jpm.2017.0548","article-title":"Identifying the population with serious illness: The \u201cDenominator\u201d challenge","volume":"21","author":"Kelley","year":"2018","journal-title":"J Palliat Med"},{"issue":"6","key":"2025122013570154500_CIT0002","doi-asserted-by":"publisher","first-page":"E1118","DOI":"10.9778\/cmajo.20220181","article-title":"Infants, children, youth and young adults with a serious illness in British Columbia: A population-based analysis using linked administrative data","volume":"11","author":"Castro-Noriega","year":"2023","journal-title":"CMAJ Open"},{"issue":"9","key":"2025122013570154500_CIT0003","doi-asserted-by":"publisher","first-page":"1641","DOI":"10.1177\/0269216320975308","article-title":"Estimating the current and future prevalence of life-limiting conditions in children in England","volume":"35","author":"Fraser","year":"2021","journal-title":"Palliat Med"},{"issue":"2","key":"2025122013570154500_CIT0004","doi-asserted-by":"publisher","first-page":"131","DOI":"10.1136\/archdischild-2016-310800","article-title":"How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study","volume":"102","author":"Jarvis","year":"2017","journal-title":"Arch Dis Child"},{"issue":"1","key":"2025122013570154500_CIT0005","doi-asserted-by":"publisher","first-page":"2692","DOI":"10.1038\/s41598-020-59499-x","article-title":"Healthcare utilization among children and young people with life-limiting conditions: Exploring palliative care needs using National Health Insurance claims data","volume":"10","author":"Kim","year":"2020","journal-title":"Sci Rep"},{"issue":"2","key":"2025122013570154500_CIT0006","doi-asserted-by":"publisher","first-page":"95","DOI":"10.1016\/j.anpede.2024.07.008","article-title":"Increasing trend in patients with life-limiting and complex chronic conditions","volume":"101","author":"Ochoa-Brezmes","year":"2024","journal-title":"An Pediatr (Engl Ed)"},{"issue":"2","key":"2025122013570154500_CIT0007","doi-asserted-by":"publisher","first-page":"339","DOI":"10.1016\/j.jpainsymman.2019.08.005","article-title":"Impact of specialized pediatric palliative care: A systematic review","volume":"59","author":"Marcus","year":"2020","journal-title":"J Pain Symptom Manage"},{"key":"2025122013570154500_CIT0008","doi-asserted-by":"publisher","DOI":"10.25318\/1310071001-eng","volume-title":"Table 13-10-0710-01 Mortality rates, by age group (table)","author":"Statistics Canada","year":"2024"},{"issue":"4","key":"2025122013570154500_CIT0009","doi-asserted-by":"publisher","first-page":"384","DOI":"10.1177\/08404704251322481","article-title":"Mending the gaps: A systems-focused rapid review on paediatric palliative care for health leaders","volume":"38","author":"Bailey","year":"2025","journal-title":"Healthc Manage Forum"},{"issue":"6","key":"2025122013570154500_CIT0010","doi-asserted-by":"publisher","first-page":"731","DOI":"10.1177\/0269216320908490","article-title":"Specialist pediatric palliative care for children and young people with cancer: A mixed-methods systematic review. Review article","volume":"34","author":"Taylor","year":"2020","journal-title":"Palliat Med"},{"issue":"8","key":"2025122013570154500_CIT0011","doi-asserted-by":"publisher","first-page":"1404","DOI":"10.1016\/j.pec.2019.02.011","article-title":"Impact of specialized pediatric palliative care programs on communication and decision-making","volume":"102","author":"Streuli","year":"2019","journal-title":"Patient Educ Couns"},{"issue":"5","key":"2025122013570154500_CIT0012","doi-asserted-by":"publisher","first-page":"1060","DOI":"10.1016\/j.jpainsymman.2020.12.003","article-title":"The impact of specialty palliative care in pediatric oncology: A systematic review","volume":"61","author":"Kaye","year":"2021","journal-title":"J Pain Symptom Manage"},{"issue":"4","key":"2025122013570154500_CIT0013","doi-asserted-by":"publisher","first-page":"e353","DOI":"10.1016\/j.jpainsymman.2022.12.139","article-title":"Home-based specialized pediatric palliative care: A systematic review and meta-analysis","volume":"65","author":"Hammer","year":"2023","journal-title":"J Pain Symptom Manage"},{"key":"2025122013570154500_CIT0014","doi-asserted-by":"publisher","first-page":"e2021002","DOI":"10.1590\/1984-0462\/2022\/40\/2021002","article-title":"Pediatric palliative care and end-of-life: A systematic review of economic health analyses","volume":"40","author":"Lo","year":"2022","journal-title":"Rev Paul Pediatr"},{"issue":"7","key":"2025122013570154500_CIT0015","doi-asserted-by":"publisher","first-page":"1031","DOI":"10.1089\/jpm.2021.0175","article-title":"Children\u2019s health care utilization and cost in the last year of life: A cohort comparison with and without regional specialist pediatric palliative care","volume":"25","author":"Lysecki","year":"2022","journal-title":"J Palliat Med"},{"issue":"5","key":"2025122013570154500_CIT0016","doi-asserted-by":"publisher","first-page":"966","DOI":"10.1542\/peds.2013-2731","article-title":"Pediatric palliative care and hospice care commitments, guidelines, and recommendations,","volume":"132","author":"American Academy of Pediatrics Section on Hospice and Palliative Medicine and Committee on Hospital Care","year":"2013","journal-title":"Pediatrics"},{"issue":"5","key":"2025122013570154500_CIT0017","doi-asserted-by":"publisher","first-page":"e529","DOI":"10.1016\/j.jpainsymman.2021.12.031","article-title":"International standards for pediatric palliative care: From IMPaCCT to GO-PPaCS","volume":"63","author":"Benini","year":"2022","journal-title":"J Pain Symptom Manage"},{"key":"2025122013570154500_CIT0018","volume-title":"End of life care for infants, children and young people with life-limiting conditions: planning and management [Internet]","author":"National Institute for Health and Care Excellence (NICE)"},{"key":"2025122013570154500_CIT0019","volume-title":"A guide to children\u2019s palliative care: supporting babies, children and young people with life-limiting and life-threatening conditions and their families [Internet]","author":"Chambers","edition":"4th ed."},{"key":"2025122013570154500_CIT0020","doi-asserted-by":"publisher","first-page":"e84","DOI":"10.1097\/aog.0000000000003425","article-title":"American College of Obstetricians and Gynecologists","volume":"134","author":"Perinatal Palliative Care: ACOG Committee Opinion, No. 786","year":"2024","journal-title":"Obstet Gynecol"},{"key":"2025122013570154500_CIT0021","doi-asserted-by":"publisher","first-page":"236","DOI":"10.1136\/archdischild-2024-327662","article-title":"BAPM Working Group. Recognising uncertainty: an integrated framework for palliative care in perinatal medicine","volume-title":"Arch Dis Child Fetal Neonatal Ed.","author":"Wilkinson","year":"2025"},{"issue":"Suppl 5","key":"2025122013570154500_CIT0022","doi-asserted-by":"publisher","first-page":"S829","DOI":"10.1002\/pbc.25695","article-title":"Palliative care as a standard of care in pediatric oncology","volume":"62","author":"Weaver","year":"2015","journal-title":"Pediatr Blood Cancer"},{"issue":"5","key":"2025122013570154500_CIT0023","doi-asserted-by":"publisher","first-page":"692","DOI":"10.1177\/02692163231163258","article-title":"Palliative care referral criteria and application in pediatric illness care: A scoping review","volume":"37","author":"Bernier Carney","year":"2023","journal-title":"Palliat Med"},{"issue":"2","key":"2025122013570154500_CIT0024","doi-asserted-by":"publisher","first-page":"e137","DOI":"10.1016\/j.jpainsymman.2023.10.015","article-title":"Improving prenatal palliative care consultation using diagnostic trigger criteria","volume":"67","author":"Lin","year":"2024","journal-title":"J Pain Symptom Manage"},{"issue":"1","key":"2025122013570154500_CIT0025","doi-asserted-by":"publisher","first-page":"e129","DOI":"10.1097\/pq9.0000000000000129","article-title":"Trigger criteria to increase appropriate palliative care consultation in the Neonatal Intensive Care Unit","volume":"4","author":"Humphrey","year":"2019","journal-title":"Pediatr Qual Saf"},{"issue":"6","key":"2025122013570154500_CIT0026","doi-asserted-by":"publisher","first-page":"1419","DOI":"10.3390\/cancers13061419","article-title":"Triggers for palliative care referral in pediatric oncology","volume":"13","author":"Cuviello","year":"2021","journal-title":"Cancers (Basel)"},{"issue":"9","key":"2025122013570154500_CIT0027","doi-asserted-by":"publisher","first-page":"686","DOI":"10.1136\/adc.2008.153494","article-title":"A paediatric palliative care programme in development: Trends in referral and location of death","volume":"95","author":"Vadeboncoeur","year":"2010","journal-title":"Arch Dis Child"},{"issue":"3","key":"2025122013570154500_CIT0028","doi-asserted-by":"publisher","first-page":"e765","DOI":"10.1542\/peds.2014-0381","article-title":"Characteristics of a pediatric hospice palliative care program over 15 years","volume":"134","author":"Siden","year":"2014","journal-title":"Pediatrics"},{"issue":"5","key":"2025122013570154500_CIT0029","doi-asserted-by":"publisher","first-page":"585","DOI":"10.1089\/jpm.2013.0206","article-title":"Referrals to a new pediatric palliative care team: details of the first 12 months of operation","volume":"17","author":"Frizzola","year":"2014","journal-title":"J Palliat Med"},{"issue":"4","key":"2025122013570154500_CIT0030","doi-asserted-by":"publisher","first-page":"E562","DOI":"10.9778\/cmajo.20160054","article-title":"Pediatric palliative care in Canada in 2012: A cross-sectional descriptive study","volume":"4","author":"Widger","year":"2016","journal-title":"CMAJ Open"},{"issue":"6","key":"2025122013570154500_CIT0031","doi-asserted-by":"crossref","first-page":"1094","DOI":"10.1542\/peds.2010-3225","article-title":"Pediatric palliative care patients: A prospective multicentre cohort study","volume":"127","author":"Feudtner CK","year":"2011","journal-title":"Pediatrics"},{"issue":"11","key":"2025122013570154500_CIT0032","doi-asserted-by":"publisher","first-page":"1725","DOI":"10.1089\/jpm.2021.0439","article-title":"Top ten tips palliative care clinicians should know about prognostication in children","volume":"24","author":"Bergstraesser","year":"2021","journal-title":"J Palliat Med"},{"issue":"6","key":"2025122013570154500_CIT0033","first-page":"101","article-title":"Perinatal hospice: Should all centers have this service","volume":"16","author":"Calhoun","year":"1997","journal-title":"Neonatal Netw"},{"issue":"1","key":"2025122013570154500_CIT0034","doi-asserted-by":"publisher","first-page":"113","DOI":"10.1097\/00005237-200601000-00032","article-title":"Extending palliative care into pregnancy and the immediate newborn period: State of the practice of perinatal palliative care","volume":"20","author":"Sumner","year":"2006","journal-title":"J Perinat Neonatal Nurs"},{"issue":"1","key":"2025122013570154500_CIT0035","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/1472-684X-14-1","article-title":"Initial development and psychometric testing of an instrument to measure the quality of children\u2019s end-of-life care","volume":"14","author":"Widger","year":"2015","journal-title":"BMC Palliat Care"}],"container-title":["Paediatrics &amp; Child Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/pch\/article-pdf\/30\/8\/723\/63857911\/pxaf060.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/pch\/article-pdf\/30\/8\/723\/63857911\/pxaf060.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,20]],"date-time":"2025-12-20T18:57:10Z","timestamp":1766257030000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/pch\/article\/30\/8\/723\/8214269"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,7,28]]},"references-count":35,"journal-issue":{"issue":"8","published-online":{"date-parts":[[2025,7,28]]},"published-print":{"date-parts":[[2025,12,20]]}},"URL":"https:\/\/doi.org\/10.1093\/pch\/pxaf060","relation":{},"ISSN":["1205-7088","1918-1485"],"issn-type":[{"value":"1205-7088","type":"print"},{"value":"1918-1485","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2025,12]]},"published":{"date-parts":[[2025,7,28]]}}}