{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,19]],"date-time":"2026-05-19T23:23:16Z","timestamp":1779232996028,"version":"3.51.4"},"reference-count":29,"publisher":"Springer Science and Business Media LLC","issue":"11","license":[{"start":{"date-parts":[[2024,9,13]],"date-time":"2024-09-13T00:00:00Z","timestamp":1726185600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,9,13]],"date-time":"2024-09-13T00:00:00Z","timestamp":1726185600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"Tata Memorial Hospital - TMC"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Eur J Pediatr"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Pediatric palliative care is a holistic care of children suffering from life-threatening or life-limiting illnesses and encompasses care of a child\u2019s body, mind, and spirit and involves giving support to the family. According to the Global Atlas of Palliative Care, 6% of the global need for palliative care is in children. In order to provide palliative care, one needs to identify and diagnose the conditions requiring palliative care. There has always been a confusion in identifying pediatric conditions requiring palliative care. There is a lot of inconsistency in the diagnosis of such conditions particularly in pre-verbal patients. This study attempts to generate more data about the common palliative care conditions and complaints with which the children present to tertiary care hospitals. To study the socio-demographic details, clinical profile, CCC (complex chronic conditions) designation, and the ACT\/ RCPCH (Association for Children with Life-threatening or Terminal Conditions and the Royal College of Pediatrics and Child Health) classification of children suffering from chronic conditions requiring palliative care. The study was conducted as a single-center retrospective observational study of pediatric patients enrolled for palliative care at a tertiary care hospital in a metropolitan city in India from 01.06.2021 to 31.06.2022. The total sample size was 400. The socio-demographic data and the clinical profile were recorded from the case records of all the 400 patients. Classification of the conditions was done as per the CCC as well as the ACT\/ RCPCH classification system. The mean age in our study was 5.15\u00a0years and there was a slighter male (59.5%) preponderance. They presented in OPDs with acute symptoms such as fatigue and fever, and they had other symptoms like tightness of the body, constipation, seizures, and difficulty in swallowing. Majority of the children (55%) were suffering from neurologic and neuromuscular conditions as per CCC followed by hematologic and immunologic conditions (10%). Category 4 (irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health) was reported as the most common category according to the ACT\/RCPCH.<\/jats:p>\n                  <jats:p>\n                    <jats:italic>\u00a0 \u00a0Conclusion:<\/jats:italic>\n                    Children suffering from chronic disease conditions requiring palliative care usually suffer from multiple symptoms which affect their daily life. As most of the patients belong to category 4 according to ACT\/RCPCH which is an irreversible but non-progressive life-limiting condition, the course of the disease is prolonged, therefore requiring comprehensive care and services for a long time. It is necessary to establish more pediatric palliative care units to address the needs of such children.\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                              <jats:italic>\u2022 Pediatric palliative care is a specialized area within palliative care, which focusses on the needs of children with life-limiting illnesses.<\/jats:italic>\n                              <jats:italic>\u2022 Data on pediatric palliative care has largely been limited to oncological conditions. There is a paucity of literature documenting the needs among children suffering from non-cancerous chronic conditions.<\/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                              <jats:italic>\u2022 This study provides vital information with respect to palliative care burden among children mainly suffering from non-oncological conditions.<\/jats:italic>\n                              <jats:italic>\u2022 It also provides clinical and socio-demographic profile of the children suffering from chronic life-limiting conditions requiring palliative care in a tertiary hospital setting in a LMIC (low- or middle-income country).<\/jats:italic>\n                            <\/jats:td>\n                          <\/jats:tr>\n                        <\/jats:tbody>\n                      <\/jats:table>\n                    <\/jats:table-wrap>\n                  <\/jats:p>","DOI":"10.1007\/s00431-024-05741-x","type":"journal-article","created":{"date-parts":[[2024,9,13]],"date-time":"2024-09-13T15:02:10Z","timestamp":1726239730000},"page":"4913-4919","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Clinical and socio-demographic profile of children receiving pediatric palliative care in a tertiary hospital of a metropolitan city in India"],"prefix":"10.1007","volume":"183","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9160-6232","authenticated-orcid":false,"given":"Pratima","family":"Bisen","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8837-0935","authenticated-orcid":false,"given":"Poonam","family":"Wade","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0001-7472-1893","authenticated-orcid":false,"given":"Pradnya","family":"Talawadekar","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1972-2073","authenticated-orcid":false,"given":"Sushma","family":"Malik","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mary Ann","family":"Muckaden","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Surbhi","family":"Rathi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9706-6695","authenticated-orcid":false,"given":"Jayita","family":"Deodhar","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2024,9,13]]},"reference":[{"issue":"4","key":"5741_CR1","doi-asserted-by":"publisher","first-page":"754","DOI":"10.1016\/j.jpainsymman.2020.04.027","volume":"60","author":"L Radbruch","year":"2020","unstructured":"Radbruch L, De Lima L, Knaul F, Wenk R, Ali Z, Bhatnagar S, Blanchard C, Bruera E, Buitrago R, Burla C, Callaway M (2020) Redefining palliative care\u2014a new consensus-based definition. J Pain Symptom Manage 60(4):754\u2013764","journal-title":"J Pain Symptom Manage"},{"key":"5741_CR2","volume-title":"Textbook of interdisciplinary pediatric palliative care E-book: expert consult","author":"J Wolfe","year":"2011","unstructured":"Wolfe J, Hinds P, Sourkes B (2011) Textbook of interdisciplinary pediatric palliative care E-book: expert consult, premium. Elsevier Health Sciences","edition":"premium"},{"key":"5741_CR3","doi-asserted-by":"publisher","DOI":"10.1093\/med\/9780198821311.001.0001","volume-title":"Oxford textbook of palliative care for children","author":"R Hain","year":"2021","unstructured":"Hain R, Goldman A, Rapoport A, Meiring M (2021) Oxford textbook of palliative care for children, 3rd edn. Oxford University Press, United Kingdom","edition":"3"},{"issue":"9","key":"5741_CR4","doi-asserted-by":"publisher","first-page":"1641","DOI":"10.1177\/0269216320975308","volume":"35","author":"LK Fraser","year":"2021","unstructured":"Fraser LK, Gibson-Smith D, Jarvis S, Norman P, Parslow RC (2021) Estimating the current and future prevalence of life-limiting conditions in children in England. Palliat Med 35(9):1641\u20131651","journal-title":"Palliat Med"},{"key":"5741_CR5","doi-asserted-by":"crossref","unstructured":"Connor SR, Sepulveda Bermedo MC (2018) Global atlas of palliative care at the end of life","DOI":"10.1007\/978-3-319-31738-0_4-1"},{"issue":"2","key":"5741_CR6","first-page":"286","volume":"27","author":"KS Rao","year":"2021","unstructured":"Rao KS, Vijayasekharan K, Venkatagiri AM, Ashwini S, Singhai P, Rao SR, Gupta M, Salins N (2021) Evaluating the need for integrated pediatric palliative care services in a pediatric oncology setting: a retrospective audit. Indian J Palliat Care 27(2):286","journal-title":"Indian J Palliat Care"},{"issue":"3","key":"5741_CR7","doi-asserted-by":"publisher","first-page":"197","DOI":"10.1177\/0269216311435268","volume":"27","author":"W Van Mechelen","year":"2013","unstructured":"Van Mechelen W, Aertgeerts B, De Ceulaer K, Thoonsen B, Vermandere M, Warmenhoven F, Van Rijswijk E, De Lepeleire J (2013) Defining the palliative care patient: a systematic review. Palliat Med 27(3):197\u2013208","journal-title":"Palliat Med"},{"key":"5741_CR8","unstructured":"Andersen RD (2018) Do you see my pain? Aspects of pain assessment in hospitalized preverbal children. Inst f\u00f6r neurobiologi, v\u00e5rdvetenskap och samh\u00e4lle\/Dept of Neurobiology, Care Sciences and Society\u00a0"},{"issue":"10","key":"5741_CR9","doi-asserted-by":"publisher","first-page":"858","DOI":"10.1177\/1049909119838985","volume":"36","author":"LC Lindley","year":"2019","unstructured":"Lindley LC, Fortney CA (2019) Pediatric complex chronic conditions: does the classification system work for infants? American Journal of Hospice and Palliative Medicine\u00ae 36(10):858\u2013863","journal-title":"American Journal of Hospice and Palliative Medicine\u00ae"},{"key":"5741_CR10","unstructured":"Association for Children with Life-threatening or Terminal Conditions and their Families, Baum D (1997) A guide to the development of children\u2019s palliative care services. Association for Children with Life-threatening or Terminal Conditions and their Families"},{"issue":"1","key":"5741_CR11","doi-asserted-by":"publisher","first-page":"1","DOI":"10.56501\/intjcommunitydent.v10i1.26","volume":"10","author":"G Kumar","year":"2022","unstructured":"Kumar G, Dash P, Patnaik J, Pany G (2022) Socioeconomic status scale-modified Kuppuswamy scale for the year 2022. International Journal of Community Dentistry 10(1):1\u20136","journal-title":"International Journal of Community Dentistry"},{"issue":"3","key":"5741_CR12","doi-asserted-by":"publisher","first-page":"236","DOI":"10.25259\/IJPC_20_2021","volume":"28","author":"MA Muckaden","year":"2022","unstructured":"Muckaden MA, Ghoshal A, Talawadekar P, Marston JM, Paleri AK (2022) Setting-up a supportive and palliative care service for children with life-threatening illnesses in Maharashtra\u2013children\u2019s palliative care project in India. Indian J Palliat Care 28(3):236","journal-title":"Indian J Palliat Care"},{"key":"5741_CR13","doi-asserted-by":"crossref","unstructured":"Harputluo\u011flu N, Y\u0131lmaz \u00dc, \u00c7elik T (2020) Etiology in pediatric palliative care: a single centre experience, pp 245\u2013250","DOI":"10.5222\/buchd.2020.63308"},{"issue":"3","key":"5741_CR14","first-page":"1","volume":"3","author":"G Ayar","year":"2022","unstructured":"Ayar G, \u015eahin \u015e, \u00c7elebi FZ (2022) Pediatric palliative care: Ankara experience. Turkish Journal of Health Research 3(3):1\u20139","journal-title":"Turkish Journal of Health Research"},{"issue":"3","key":"5741_CR15","doi-asserted-by":"publisher","first-page":"1285","DOI":"10.1007\/s11845-022-03134-3","volume":"192","author":"J Hayden","year":"2023","unstructured":"Hayden J, Larkin MA, Noonan H, Conroy M, Twomey F, O\u2019Reilly V, Gallagher S (2023) Palliative care services for children with life-limiting conditions. Irish Journal of Medical Science (1971) 192(3):1285\u20131290","journal-title":"Irish Journal of Medical Science (1971)"},{"issue":"2","key":"5741_CR16","doi-asserted-by":"publisher","first-page":"207","DOI":"10.4103\/0019-509X.175841","volume":"52","author":"V Radhakrishnan","year":"2015","unstructured":"Radhakrishnan V, Ganesan P, Rajendranath R, Ganesan TS, Sagar TG (2015) Nutritional profile of pediatric cancer patients at Cancer Institute. Chennai Indian Journal of Cancer 52(2):207\u2013209","journal-title":"Chennai Indian Journal of Cancer"},{"issue":"13","key":"5741_CR17","doi-asserted-by":"publisher","first-page":"1331","DOI":"10.1200\/JCO.2013.52.6962","volume":"32","author":"E Orgel","year":"2014","unstructured":"Orgel E, Sposto R, Malvar J, Seibel NL, Ladas E, Gaynon PS, Freyer DR (2014) Impact on survival and toxicity by duration of weight extremes during treatment for pediatric acute lymphoblastic leukemia: a report from the Children\u2019s Oncology Group. J Clin Oncol 32(13):1331","journal-title":"J Clin Oncol"},{"issue":"4","key":"5741_CR18","doi-asserted-by":"publisher","first-page":"496","DOI":"10.4103\/IJPC.IJPC_72_18","volume":"24","author":"G Kumar","year":"2018","unstructured":"Kumar G, Panda N, Roy R, Bhattacharjee G (2018) An observational study to assess the socioeconomic status and demographic profile of advanced cancer patients receiving palliative care in a tertiary-level cancer hospital of Eastern India. Indian J Palliat Care 24(4):496","journal-title":"Indian J Palliat Care"},{"issue":"9","key":"5741_CR19","doi-asserted-by":"publisher","first-page":"5380","DOI":"10.19082\/5380","volume":"9","author":"P Piran","year":"2017","unstructured":"Piran P, Khademi Z, Tayari N, Mansouri N (2017) Caregiving burden of children with chronic diseases. Electron Physician 9(9):5380","journal-title":"Electron Physician"},{"issue":"8","key":"5741_CR20","doi-asserted-by":"publisher","first-page":"e2119730","DOI":"10.1001\/jamanetworkopen.2021.19730","volume":"4","author":"C Feudtner","year":"2021","unstructured":"Feudtner C, Nye R, Hill DL, Hall M, Hinds P, Johnston EE, Friebert S, Hays R, Kang TI, Wolfe J, Crew K (2021) Polysymptomatology in pediatric patients receiving palliative care based on parent-reported data. JAMA Netw Open 4(8):e2119730","journal-title":"JAMA Netw Open"},{"issue":"191","key":"5741_CR21","doi-asserted-by":"publisher","first-page":"157","DOI":"10.1016\/B978-0-12-824535-4.00015-X","volume":"1","author":"Z HarnEnz","year":"2023","unstructured":"HarnEnz Z, Vermilion P, Foster-Barber A, Treat L (2023) Pediatric neuropalliative care. Handb Clin Neurol 1(191):157\u2013184","journal-title":"Handb Clin Neurol"},{"issue":"17","key":"5741_CR22","doi-asserted-by":"publisher","first-page":"1928","DOI":"10.1200\/JCO.2014.59.1222","volume":"33","author":"J Wolfe","year":"2015","unstructured":"Wolfe J, Orellana L, Ullrich C, Cook EF, Kang TI, Rosenberg A, Geyer R, Feudtner C, Dussel V (2015) Symptoms, and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST study. J Clin Oncol 33(17):1928","journal-title":"J Clin Oncol"},{"issue":"3","key":"5741_CR23","doi-asserted-by":"publisher","first-page":"15765","DOI":"10.21037\/apm.2016.04.03","volume":"5","author":"AT Olagunju","year":"2016","unstructured":"Olagunju AT, Sarimiye FO, Olagunju TO, Habeebu MY, Aina OF (2016) Child\u2019s symptom burden and depressive symptoms among caregivers of children with cancers: an argument for early integration of pediatric palliative care. Annals of palliative medicine 5(3):15765\u201316165","journal-title":"Annals of palliative medicine"},{"issue":"1","key":"5741_CR24","doi-asserted-by":"publisher","first-page":"10","DOI":"10.1016\/S0885-3924(01)00375-X","volume":"23","author":"JJ Collins","year":"2002","unstructured":"Collins JJ, Devine TD, Dick GS, Johnson EA, Kilham HA, Pinkerton CR, Stevens MM, Thaler HT, Portenoy RK (2002) The measurement of symptoms in young children with cancer: the validation of the Memorial Symptom Assessment Scale in children aged 7\u201312. J Pain Symptom Manage 23(1):10\u201316","journal-title":"J Pain Symptom Manage"},{"issue":"12","key":"5741_CR25","doi-asserted-by":"publisher","first-page":"15","DOI":"10.1007\/s40271-018-0333-5","volume":"4","author":"E Namisango","year":"2019","unstructured":"Namisango E, Bristowe K, Allsop MJ, Murtagh FE, Abas M, Higginson IJ, Downing J, Harding R (2019) Symptoms and concerns among children and young people with life-limiting and life-threatening conditions: a systematic review highlighting meaningful health outcomes. The Patient-Patient-Centered Outcomes Research 4(12):15\u201355","journal-title":"The Patient-Patient-Centered Outcomes Research"},{"issue":"9","key":"5741_CR26","doi-asserted-by":"publisher","first-page":"985","DOI":"10.1111\/j.1651-2227.2012.02680.x","volume":"101","author":"C Malcolm","year":"2012","unstructured":"Malcolm C, Hain R, Gibson F, Adams S, Anderson G, Forbat L (2012) Challenging symptoms in children with rare life-limiting conditions: findings from a prospective diary and interview study with families. Acta Paediatr 101(9):985\u2013992","journal-title":"Acta Paediatr"},{"issue":"8","key":"5741_CR27","doi-asserted-by":"publisher","first-page":"754","DOI":"10.1136\/archdischild-2013-305246","volume":"99","author":"R Steele","year":"2014","unstructured":"Steele R, Siden H, Cadell S, Davies B, Andrews G, Feichtinger L, Singh M (2014) Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions. Arch Dis Child 99(8):754\u2013762","journal-title":"Arch Dis Child"},{"issue":"1","key":"5741_CR28","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/1471-2431-14-199","volume":"14","author":"C Feudtner","year":"2014","unstructured":"Feudtner C, Feinstein JA, Zhong W, Hall M, Dai D (2014) Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation. BMC Pediatr 14(1):1\u20137","journal-title":"BMC Pediatr"},{"issue":"2","key":"5741_CR29","doi-asserted-by":"publisher","first-page":"159","DOI":"10.1016\/j.jpainsymman.2017.04.006","volume":"54","author":"HU Bender","year":"2017","unstructured":"Bender HU, Riester MB, Borasio GD, F\u00fchrer M (2017) \u201cLet\u2019s bring her home first.\u201d Patient characteristics and place of death in specialized pediatric palliative home care. J Pain Symptom Manage 54(2):159\u2013166","journal-title":"J Pain Symptom Manage"}],"container-title":["European Journal of Pediatrics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00431-024-05741-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s00431-024-05741-x\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00431-024-05741-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,10,14]],"date-time":"2024-10-14T03:06:16Z","timestamp":1728875176000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s00431-024-05741-x"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,9,13]]},"references-count":29,"journal-issue":{"issue":"11","published-online":{"date-parts":[[2024,11]]}},"alternative-id":["5741"],"URL":"https:\/\/doi.org\/10.1007\/s00431-024-05741-x","relation":{"has-preprint":[{"id-type":"doi","id":"10.21203\/rs.3.rs-4576808\/v1","asserted-by":"object"}]},"ISSN":["1432-1076"],"issn-type":[{"value":"1432-1076","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,9,13]]},"assertion":[{"value":"13 June 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"9 August 2024","order":2,"name":"revised","label":"Revised","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"19 August 2024","order":3,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"13 September 2024","order":4,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"This study was performed in line with the principles of Indian Good Clinical Practice Guidelines (2001) and Indian Council of Medical Research - National Ethical Guidelines for Biomedical and Health Research involving Human participants (2017). Approval was granted by the Ethics Committee for Academic Research Projects (ECARP), T.N. Medical College and BYL Nair Ch. Hospital, Mumbai. (ECARP\/2022\/151 dated 16\/Dec\/2022.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval"}},{"value":"The authors declare no competing interests.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}]}}