Clinical & Socio-demographic profile of children receiving Pediatric Palliative Care in a tertiary hospital of a Metropolitan city in India

Clinical & Socio-demographic profile of children receiving Pediatric Palliative Care in a tertiary hospital of a Metropolitan city in India | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Clinical & Socio-demographic profile of children receiving Pediatric Palliative Care in a tertiary hospital of a Metropolitan city in India Pratima Bisen, Poonam Wade, Pradnya Talwadekar, Sushma Malik, and 3 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4576808/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 13 Sep, 2024 Read the published version in European Journal of Pediatrics → Version 1 posted 10 You are reading this latest preprint version Abstract Introduction/ Background : Pediatric palliative care is a holistic care of children suffering from life threatening or life limiting illnesses and encompasses care of a child’s body, mind, spirit and also 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 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. Objectives : 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. Materials and methods : The study was conducted as a single centre 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 was 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. Results : Mean age in our study was 5.15 years and there was slighter male (59.5%) preponderance. They presented in OPD’s with acute symptoms such as fatigue and fever & they had other symptoms like tightness of 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 most common category according to the ACT/RCPCH. Conclusion : Childrensuffering 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 irreversible but non-progressive life limiting condition, the course of disease is prolonged; therefore requiring comprehensive care & services for long time. It is necessary to establish more pediatric palliative care units to address the needs of such children. Palliative Care Complex chronic condition life limiting conditions holistic care Figures Figure 1 Figure 2 What is known Pediatric palliative care is a specialized area within palliative care, which focusses on the needs of children with life-limiting illnesses. 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. What is new : This study provides vital information with respect to palliative care burden among children mainly suffering from non-oncological conditions. It also provides clinical and sociodemographic 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). Introduction/ Background Palliative care has been defined as ‘the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. 1 Similarly, Pediatric Palliative Care (PPC) is total care of a child’s body, mind and spirit and it also involves giving support to the family. PPC serves children suffering from various severe diseases and complex chronic conditions from birth to young adulthood while providing the necessary level of care to these patients which is also aligned to the goals of the patients and their families. 2, 3 Literature around the world indicates that prevalence of children with a life-limiting condition was 66.4 per 10,000 in 2017/18 and is predicted to rise to 84.22 per 10,000 by 2030. 4 The Global Atlas of Palliative Care at the End of Life 5 , estimates that 6% of the global need for palliative care (based on mortality figures) is in children. In addition, the needs for palliative care have also been increasing among children suffering from cancers. 6 To provide palliative care, one needs to identify and diagnose the conditions requiring palliative care. Conventionally, a lot of literature can be found regarding pediatric palliative care in children with cancers. 6,7 However there is paucity of literature on palliative care for non-oncology conditions. This is because, there is still confusion regarding identification of non-cancerous conditions requiring palliative care. 7 It is a very common practice to admit patients requiring palliative care in acute care hospitals. Hence, it is very important to understand and be aware of the main conditions that lead to hospitalization of such patients. The identification of these conditions in children is further complicated by the fact that they/ caretakers are unable give a complete and reliable history about their problems. Preverbal patients, in particular, do not even communicate their complaints. This leads to inconsistency in diagnosis of various conditions as well as difficulty in identification of common complaints such as pain. 8 The purpose of our study is to examine the common conditions of children presenting to a paediatric palliative care clinic in a general tertiary care hospital in a LMIC (Low- or Middle-Income Country) setting like India. We are contributing to the available literature – which may be less in low resource settings. The objectives were to assess the socio-demographic details of children suffering from chronic conditions requiring palliative care, to determine the clinical profile & complex chronic conditions (CCC) according to the CCC system designation of children with chronic conditions requiring palliative care and to examine the classification of the disease conditions according to the Association for Children with Life-threatening or Terminal Conditions and the Royal College of Pediatrics and Child Health. Materials & Methods Study design, setting and study population : We conducted as a single-centre retrospective observational study of all pediatric patients (aged from birth till 12 years of age) enrolled for palliative care in the Paediatric Palliative Care clinic. The referrals to the clinic were from Pediatric Ward, Pediatric OPD, Pediatric surgery ward, hematology clinic, Pediatric Intensive Care Unit (PICU), Neonatal Intensive Care Unit (NICU) at a tertiary care hospital in a metropolitan city in India from 01.06.2021 to 31.06.2022. The study was conducted after seeking approval from Ethics Committee of the Institute (Ref. No: ECARP/2022/151). Eligibility criteria -All patients referred to PPC service from above mentioned settings in the study period. Data collection : The data was collected from prospectively maintained medical records in the PPC clinic. Variables noted were a) Sociodemographic variable b) symptoms and c) Clinical – according to the systems i.e. complex chronic conditions (CCC) classification system as well as the Association for Children with Life-threatening or Terminal Conditions and the Royal College of Pediatrics and Child Health. Data analysis : The data collected was entered in the Microsoft Excel worksheets. Descriptive statistics were used to analyse the socio-demographic and clinical data. Relevant tables, pie charts and bar diagrams were also used to represent the results. Complex Chronic Conditions (CCC) classification system : Life limiting illnesses are classified in nine CCC categories: neuromuscular (brain/spinal cord malformation, intellectual disability, CNS disease, cerebral palsy, epilepsy, muscular dystrophy), cardiovascular (heart malformations, cardiomyopathies, and dysrhythmias), cancer, congenital anomalies (chromosomal abnormalities, bone/joint abnormalities, diaphragm/abdominal abnormalities, other abnormalities), respiratory (respiratory malformations, chronic respiratory disease, cystic fibrosis), gastrointestinal (congenital anomalies, liver disease, inflammatory bowel disease), metabolic (amino acid, carbohydrate, lipid, storage disorders, other disorders); hematologic, (sickle cell disease, anaemias, hereditary immunodeficiency, HIV), and renal (congenital abnormalities, chronic renal failure). 9 Association for Children with Life-threatening or Terminal Conditions and the Royal College of Pediatrics and Child Health Categorization 10 : Life-limiting and life-threatening conditions affecting children can be divided broadly into four groups- Conditions where curative treatment may be feasible but can fail, e.g. cancer. Conditions requiring intensive long-term treatment aimed at maintaining the quality of life allowing participation in normal activities, e.g. severe immunodeficiency, cystic fibrosis, Muscular dystrophy. Progressive conditions without curative treatment options where treatment is exclusively palliative and may commonly extend over many years, e.g. Progressive metabolic disorders. Irreversible but non progressive conditions causing severe disability, e.g. cerebral palsy, where there remains a high risk of an unpredictable life-threatening event. Results A total of 400 children were referred to the PPC clinic in the study duration. The mean age of the patients receiving PPC was 5.15years. Of the 400 study subjects, 238 (59.5%) were males (Table 1 ). More than half of the children (231, 57.8%) belonged to hindu families followed by 160 (40%) children who belonged to muslim families (Table 1 ). Almost half of the patients (186, 46.5%) had a normal nutritional status while 63 (15.8%) had Severe Acute Malnutrition. About 15 (3.8%) and 9 (2.3%) children were overweight and obese respectively. Majority of the participants (320, 80%) belonged to the upper lower socio-economic class (Modified Kuppuswamy scale) 11 followed by 65 (16.3%) participants who belonged to the middle class. It was also found that mothers were the primary caregivers for almost all (397, 99.3%) of the study participants (Table 1 ). Table 1 Patients characteristics and sociodemographic profile Characteristics Number Frequency Entire 400 100 Age < 1y 59 14.8 1-<5y 132 33 5-<10y 138 34.5 10-≤12 71 17.8 Gender Male 238 59.5 Female 162 40.5 Religion Hindu 231 57.8 Muslim 160 40.0 Buddhist 6 1.5 Christian 3 0.8 Primary caregiver Mother 397 99.3 Aunt 2 0.5 Grandmother 1 0.3 Socioeconomic classification as per Kuppuswamy scale Upper 2 0.5 Upper middle 25 6.3 Lower middle 40 10 Upper Lower 320 80 Lower 13 3.3 The participants in the study were found to suffer from multiple complaints at the same time. As evident from Table 2 , the most prevalent complaint reported by the children was lack of energy/ fatigue (283, 70.8%) followed by fever (188, 47%) and constipation (156, 39%). Table 2 Symptomatology of Patients Symptom Frequency Percentage Lack of energy (Fatigue) 283 70.8 Fever 188 47 Constipation 156 39 Tightness of body/ spasticity 156 39 Seizures 138 34.5 Difficulty in Swallowing 131 32.8 Sleep difficulty 130 32.5 Eating appetite 119 29.8 Cough 117 29.3 Irritable 114 28.5 Shortness of breath 111 27.8 Drowsy 105 26.3 Looseness of body/ hypotonia 73 18.3 Pain 69 17.3 Vomiting 64 16 Changes in skin (rash and discolouration) 45 11.3 Bleeding 35 8.8 Painful Urination 34 8.5 Mouth sore 30 7.5 Dry mouth 27 6.8 Excessive Sweating 20 5 Diarrhoea 18 4.5 Itching 9 2.3 More than half (220, 55%) of the patients belong to the neurologic & neuromuscular conditions category as per the CCC categorization (Fig. 1 ). Only 40 (10%) patients belonged to the hematologic & immunologic conditions followed closely by the renal & urologic conditions (36, 9%). The least number of patients belonged to the neonatal conditions’ category (4, 1%). When classified according to the ACT/RCPCH classification, 164 (41%) patients were assigned to ACT-4, 134 (33%) to ACT-1, 54 (13.5%) to ACT-2 and 48 (12%) to ACT-3 (Fig. 2 ). Discussion In our study [Table 1 ], Mean age was 5.15 years while a multi-centre study conducted by Muckaden et. al. in Western India reported the average age of children at various sites as 11 years, 9 years and 6 years. 12 In our study, there were 59.5% males [Table 1 ] which was similar to the studies conducted by Hayden et. al. 13 and Muckaden et. al. 12 who reported 51% and 60.6% subjects as males respectively. In our study, about 53.7% patients were malnourished with 47.6% being undernourished, 3.8% being overweight and 2.3% being obese. These finding were similar to the study conducted by Radhakrishnan et al. who found that 153 out of 295 (52%) patients were well-nourished, 130/295 (44%) patients were undernourished and 12/295 (4%) patients were obese. 14 With respect to the prevalence of obesity, our study findings presented a distinct contrast as compared to another study from the United States of America (USA) conducted by Orgel E et. al. which reported almost 14% obesity. 15 This difference could be due to the influence of socio-economic status and cultural habits on the nutritional status. In our study majority of the patients (83.3%) belonged to lower class (Modified Kuppuswamy classification). A different trend was observed in a study conducted by Kumar G et. al. where more than half of the participants belonged to the middle class. 16 This difference could be due to the fact that the majority of the participants in the current study were migrants from different cities and states. Almost all the caregivers (99.3%) in the current study were mothers which is very similar to study conducted by Pegah Piran et. al. 17 in Iran where most the caregivers were the mothers. This can be explained by the traditional and cultural expectations from women to be the primary caregivers of their children. In our study the most prevalent symptoms were fatigue or lack of energy, fever, tightness of body (spasticity), constipation, seizures and difficulty in swallowing (Table 2 ). In another study done by Feudtner et. al. the most prevalent symptoms were pain, lack of energy, Irritability, drowsiness and shortness of breath. 18 Research from around the world shows that children suffering from life-threatening illness often report many symptoms such as fatigue, irritability, shortness of breath and pain. 19,20,21,22 Some authors have also reported that children with progressive conditions usually presented with behavioural symptoms such as agitation, 23 feeding problems, 24 and sleep difficulties. We also found spasticity, seizures and constipation as common symptoms which was different from other studies which could be because majority of our patients were suffering from neurological disorders while the participants in these studies were cancer patients. 19,20,21,22 As per the current study, the most prevalent complex clinical conditions were neurological [220 (55%)] followed by hematological [40 (10%)], renal [36 (9%)], congenital causes [27( 6.8%)] and Malignancy [22 (5.5%)] which was nearly similar to with study conducted by Feudtner et. al. which demonstrated cardiovascular, neurological and malignancy as the most common CCC group. 18 Another study by Feudtner C et. al. also reported the prevalent complex chronic conditions as gastrointestinal (357 [71.3%]), neurologic (289 [57.7%]), and cardiovascular (310 [61.9%]) conditions. 25 The majority (164, 41%) of the patients in the study belonged to the ‘Irreversible but non progressive conditions causing severe disability’ (ACT-4) according to the ACT/ RCPCH. Almost 134 (33%) participants belonged to the ACT-1 category (Life-threatening conditions for which curative treatment may be feasible but can fail). As per study by Bender et. al., thirty-six percent of patients were assigned to ACT-3, 34% to ACT-4, 26% to ACT-1, and 4% to ACT-2. 26 The limitation of the study was that we couldn’t compare our findings with other studies based on chronic conditions (other than malignancy) as literature regarding the same is limited. We had to rely mainly on cancer-related studies. Conclusion This study provides essential insights with respect to the socio-demographic profile and symptoms of children suffering from life-limiting illnesses requiring palliative care. Patients suffering from chronic disease conditions requiring palliative care suffer from multiple symptoms which affect their daily life and knowledge of these symptoms is essential for their management. The majority of patients were male with median age 5.15 years. Most of them were from a poor financial background and are malnourished and the mothers or women of the house usually carry the entire caregiving burden. As most of our patients belong to Neurological & neuromuscular CCC category and ACT-4 according to ACT/RCPCH, the course of disease is prolonged and so they require holistic care & services for long time. It is of utmost importance for similar units to be set up to address the palliative care needs for these children. Declarations Ethics approval: 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. Funding: The authors declare that no funds, grants, or other support were received during the preparation of this manuscript. Author Contribution Concept and design of the study: P.B., S.M., P.W., P.T., J.D.; Data collection & analysis: P.B., S.M., P.W., P.T.; Intellectual content and interpretation: P.B., S.M., J.D.; Manuscript drafting and revisions: P.B., S.M., J.D.; Critical inputs, data accuracy and references: P.W., P.T., M.A.M., S.R. All authors contributed to the execution of the study and approve the final version. References Radbruch L, De Lima L, Knaul F, Wenk R, Ali Z, Bhatnaghar S, Blanchard C, Bruera E, Buitrago R, Burla C, Callaway M. Redefining palliative care—a new consensus-based definition. Journal of pain and symptom management. 2020 Oct 1;60(4):754 − 64. Wolfe J, Hinds P, Sourkes B. Textbook of interdisciplinary pediatric palliative care E-book: expert consult premium edition. Elsevier Health Sciences; 2011 Jan 26. Hain R, Goldman A, Rapoport A, Meiring M. 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Cite Share Download PDF Status: Published Journal Publication published 13 Sep, 2024 Read the published version in European Journal of Pediatrics → Version 1 posted Editorial decision: Revision requested 23 Jul, 2024 Reviews received at journal 23 Jul, 2024 Reviewers agreed at journal 22 Jul, 2024 Reviewers agreed at journal 11 Jul, 2024 Reviews received at journal 03 Jul, 2024 Reviewers agreed at journal 03 Jul, 2024 Reviewers invited by journal 03 Jul, 2024 Editor assigned by journal 03 Jul, 2024 Submission checks completed at journal 02 Jul, 2024 First submitted to journal 13 Jun, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4576808","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":330742225,"identity":"8df2ea72-8099-44d4-b673-fd25c17ff665","order_by":0,"name":"Pratima Bisen","email":"","orcid":"","institution":"Department of Pediatrics, TNMC and B.Y.L Ch. Nair Hospital","correspondingAuthor":false,"prefix":"","firstName":"Pratima","middleName":"","lastName":"Bisen","suffix":""},{"id":330742226,"identity":"9bc39e30-bb36-44f4-a23e-ab09edfecff8","order_by":1,"name":"Poonam Wade","email":"","orcid":"","institution":"Department of Pediatrics, TNMC and B.Y.L Ch. Nair Hospital","correspondingAuthor":false,"prefix":"","firstName":"Poonam","middleName":"","lastName":"Wade","suffix":""},{"id":330742227,"identity":"9ac2ff84-f150-459b-b6ab-004af4a9ed58","order_by":2,"name":"Pradnya Talwadekar","email":"","orcid":"","institution":"Department of Palliative Medicine, Tata Memorial Hospital","correspondingAuthor":false,"prefix":"","firstName":"Pradnya","middleName":"","lastName":"Talwadekar","suffix":""},{"id":330742228,"identity":"c613fa37-4196-46be-bffc-2123b3a93d81","order_by":3,"name":"Sushma Malik","email":"","orcid":"","institution":"Department of Pediatrics, TNMC and B.Y.L Ch. Nair Hospital","correspondingAuthor":false,"prefix":"","firstName":"Sushma","middleName":"","lastName":"Malik","suffix":""},{"id":330742229,"identity":"0b33dacb-bd10-4d7e-bd73-290e8700a1cd","order_by":4,"name":"Mary Ann Muckaden","email":"","orcid":"","institution":"Department of Palliative Medicine, Tata Memorial Hospital","correspondingAuthor":false,"prefix":"","firstName":"Mary","middleName":"Ann","lastName":"Muckaden","suffix":""},{"id":330742230,"identity":"43bc76f0-0f9f-4fa8-970f-62533fd81e07","order_by":5,"name":"Surbhi Rathi","email":"","orcid":"","institution":"Department of Pediatrics, TNMC and B.Y.L Ch. Nair Hospital","correspondingAuthor":false,"prefix":"","firstName":"Surbhi","middleName":"","lastName":"Rathi","suffix":""},{"id":330742231,"identity":"095d2131-3112-4c12-8207-b62b2bc4224e","order_by":6,"name":"Jayita Deodhar","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA3UlEQVRIiWNgGAWjYBACxgY2BokPBhI8/AwMbDBBZoJaJGdU2MhJNhCrBWS2NM+ZNGODA8RqYZ6RlniDt+1w4uYbyc8efKhgkOdn4DE2wOuwGWmHLSSBWrbdSDM3nHGGwXBmA49xAn4t6W0ShmAtCWbSvG0MCQYHeIwPENSSCHLYjPRvxGpJOyZxAOR9iRyELfgd1vMs2bIBGMgSZ96USc44I2E4s5mtGK/3DdvTDG//AUVle/o2iQ8VNvL87M2bJfBqaYCxBMCukSAckfJwFv8BAkpHwSgYBaNgxAIAeO1HfEU62xwAAAAASUVORK5CYII=","orcid":"","institution":"Department of Palliative Medicine, Tata Memorial Hospital","correspondingAuthor":true,"prefix":"","firstName":"Jayita","middleName":"","lastName":"Deodhar","suffix":""}],"badges":[],"createdAt":"2024-06-13 14:20:56","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4576808/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4576808/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1007/s00431-024-05741-x","type":"published","date":"2024-09-13T15:57:02+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":61182022,"identity":"64a95806-a10f-436a-bfab-58e38f39d9b6","added_by":"auto","created_at":"2024-07-26 16:53:35","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":50135,"visible":true,"origin":"","legend":"\u003cp\u003eCategorization of patient according to CCC (Complex clinical conditions) Classification\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-4576808/v1/eb5053410c4f3fb7aced78ec.png"},{"id":61182023,"identity":"0f6dfd21-013a-4ddf-8e8a-a0a2d1197372","added_by":"auto","created_at":"2024-07-26 16:53:35","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":109198,"visible":true,"origin":"","legend":"\u003cp\u003eCategorization of patient according to ACT/RCPCH (Association for Children with Life Threatening or Terminal Conditions and their Families and the Royal College of Pediatrics and Child Health) classification\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-4576808/v1/a825fe81f0b616f95e8ea17a.png"},{"id":64618956,"identity":"bf8c8fd8-ffcb-4bb7-b8c8-6a79a6047b65","added_by":"auto","created_at":"2024-09-16 16:08:47","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":615972,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4576808/v1/0430b727-f2cf-404a-9224-7397ac852316.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Clinical \u0026 Socio-demographic profile of children receiving Pediatric Palliative Care in a tertiary hospital of a Metropolitan city in India","fulltext":[{"header":"What is known","content":"\u003cp\u003ePediatric palliative care is a specialized area within palliative care, which focusses on the needs of children with life-limiting illnesses.\u003c/p\u003e\u003cp\u003eData 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.\u003c/p\u003e\u003cp\u003e\u003cem\u003eWhat is new\u003c/em\u003e:\u003c/p\u003e\u003cp\u003eThis study provides vital information with respect to palliative care burden among children mainly suffering from non-oncological conditions.\u003c/p\u003e\u003cp\u003eIt also provides clinical and sociodemographic 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).\u003c/p\u003e"},{"header":"Introduction/ Background","content":"\u003cp\u003ePalliative care has been defined as \u0026lsquo;the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers.\u003csup\u003e1\u003c/sup\u003e Similarly, Pediatric Palliative Care (PPC) is total care of a child\u0026rsquo;s body, mind and spirit and it also involves giving support to the family. PPC serves children suffering from various severe diseases and complex chronic conditions from birth to young adulthood while providing the necessary level of care to these patients which is also aligned to the goals of the patients and their families.\u003csup\u003e2, 3\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eLiterature around the world indicates that prevalence of children with a life-limiting condition was 66.4 per 10,000 in 2017/18 and is predicted to rise to 84.22 per 10,000 by 2030.\u003csup\u003e4\u003c/sup\u003e The Global Atlas of Palliative Care at the End of Life \u003csup\u003e5\u003c/sup\u003e, estimates that 6% of the global need for palliative care (based on mortality figures) is in children. In addition, the needs for palliative care have also been increasing among children suffering from cancers.\u003csup\u003e6\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eTo provide palliative care, one needs to identify and diagnose the conditions requiring palliative care. Conventionally, a lot of literature can be found regarding pediatric palliative care in children with cancers.\u003csup\u003e6,7\u003c/sup\u003e However there is paucity of literature on palliative care for non-oncology conditions. This is because, there is still confusion regarding identification of non-cancerous conditions requiring palliative care.\u003csup\u003e7\u003c/sup\u003e It is a very common practice to admit patients requiring palliative care in acute care hospitals. Hence, it is very important to understand and be aware of the main conditions that lead to hospitalization of such patients. The identification of these conditions in children is further complicated by the fact that they/ caretakers are unable give a complete and reliable history about their problems. Preverbal patients, in particular, do not even communicate their complaints. This leads to inconsistency in diagnosis of various conditions as well as difficulty in identification of common complaints such as pain.\u003csup\u003e8\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eThe purpose of our study is to examine the common conditions of children presenting to a paediatric palliative care clinic in a general tertiary care hospital in a LMIC (Low- or Middle-Income Country) setting like India. We are contributing to the available literature \u0026ndash; which may be less in low resource settings. The objectives were to assess the socio-demographic details of children suffering from chronic conditions requiring palliative care, to determine the clinical profile \u0026amp; complex chronic conditions (CCC) according to the CCC system designation of children with chronic conditions requiring palliative care and to examine the classification of the disease conditions according to the Association for Children with Life-threatening or Terminal Conditions and the Royal College of Pediatrics and Child Health.\u003c/p\u003e"},{"header":"Materials \u0026 Methods","content":"\u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003eStudy design, setting and study population\u003c/span\u003e: We conducted as a single-centre retrospective observational study of all pediatric patients (aged from birth till 12 years of age) enrolled for palliative care in the Paediatric Palliative Care clinic. The referrals to the clinic were from Pediatric Ward, Pediatric OPD, Pediatric surgery ward, hematology clinic, Pediatric Intensive Care Unit (PICU), Neonatal Intensive Care Unit (NICU) at a tertiary care hospital in a metropolitan city in India from 01.06.2021 to 31.06.2022. The study was conducted after seeking approval from Ethics Committee of the Institute (Ref. No: ECARP/2022/151).\u003c/p\u003e \u003cp\u003e \u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003eEligibility criteria\u003c/span\u003e-All patients referred to PPC service from above mentioned settings in the study period.\u003c/p\u003e \u003cp\u003e \u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003eData collection\u003c/span\u003e: The data was collected from prospectively maintained medical records in the PPC clinic. Variables noted were a) Sociodemographic variable b) symptoms and c) Clinical \u0026ndash; according to the systems i.e. complex chronic conditions (CCC) classification system as well as the Association for Children with Life-threatening or Terminal Conditions and the Royal College of Pediatrics and Child Health.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003eData analysis\u003c/span\u003e: The data collected was entered in the Microsoft Excel worksheets. Descriptive statistics were used to analyse the socio-demographic and clinical data. Relevant tables, pie charts and bar diagrams were also used to represent the results.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003e \u003cb\u003eComplex Chronic Conditions (CCC) classification system\u003c/b\u003e: Life limiting illnesses are classified in nine CCC categories: neuromuscular (brain/spinal cord malformation, intellectual disability, CNS disease, cerebral palsy, epilepsy, muscular dystrophy), cardiovascular (heart malformations, cardiomyopathies, and dysrhythmias), cancer, congenital anomalies (chromosomal abnormalities, bone/joint abnormalities, diaphragm/abdominal abnormalities, other abnormalities), respiratory (respiratory malformations, chronic respiratory disease, cystic fibrosis), gastrointestinal (congenital anomalies, liver disease, inflammatory bowel disease), metabolic (amino acid, carbohydrate, lipid, storage disorders, other disorders); hematologic, (sickle cell disease, anaemias, hereditary immunodeficiency, HIV), and renal (congenital abnormalities, chronic renal failure).\u003csup\u003e9\u003c/sup\u003e\u003c/p\u003e \u003cp\u003e \u003cb\u003eAssociation for Children with Life-threatening or Terminal Conditions and the Royal College of Pediatrics and Child Health Categorization\u003c/b\u003e \u003csup\u003e10\u003c/sup\u003e: Life-limiting and life-threatening conditions affecting children can be divided broadly into four groups-\u003c/p\u003e \u003cp\u003e \u003col\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eConditions where curative treatment may be feasible but can fail, e.g. cancer.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eConditions requiring intensive long-term treatment aimed at maintaining the quality of life allowing participation in normal activities, e.g. severe immunodeficiency, cystic fibrosis, Muscular dystrophy.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eProgressive conditions without curative treatment options where treatment is exclusively palliative and may commonly extend over many years, e.g. Progressive metabolic disorders.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eIrreversible but non progressive conditions causing severe disability, e.g. cerebral palsy, where there remains a high risk of an unpredictable life-threatening event.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e \u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eA total of 400 children were referred to the PPC clinic in the study duration. The mean age of the patients receiving PPC was 5.15years. Of the 400 study subjects, 238 (59.5%) were males (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). More than half of the children (231, 57.8%) belonged to hindu families followed by 160 (40%) children who belonged to muslim families (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Almost half of the patients (186, 46.5%) had a normal nutritional status while 63 (15.8%) had Severe Acute Malnutrition. About 15 (3.8%) and 9 (2.3%) children were overweight and obese respectively.\u003c/p\u003e\u003cp\u003eMajority of the participants (320, 80%) belonged to the upper lower socio-economic class (Modified Kuppuswamy scale)\u003csup\u003e11\u003c/sup\u003e followed by 65 (16.3%) participants who belonged to the middle class. It was also found that mothers were the primary caregivers for almost all (397, 99.3%) of the study participants (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003ePatients characteristics and sociodemographic profile\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCharacteristics\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNumber\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFrequency\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEntire\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e400\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e100\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eAge\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;1y\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e59\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1-\u0026lt;5y\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e132\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e33\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5-\u0026lt;10y\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e138\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e34.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e10-\u0026le;12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e71\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e17.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e238\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e59.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e162\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e40.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eReligion\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHindu\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e231\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e57.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMuslim\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e160\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e40.0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBuddhist\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eChristian\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003ePrimary caregiver\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMother\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e397\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e99.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAunt\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGrandmother\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eSocioeconomic classification as per Kuppuswamy scale\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUpper\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUpper middle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e25\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLower middle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e40\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUpper Lower\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e320\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e80\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLower\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThe participants in the study were found to suffer from multiple complaints at the same time. As evident from Table \u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e, the most prevalent complaint reported by the children was lack of energy/ fatigue (283, 70.8%) followed by fever (188, 47%) and constipation (156, 39%).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSymptomatology of Patients\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSymptom\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFrequency\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003ePercentage\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLack of energy (Fatigue)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e283\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e70.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFever\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e188\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e47\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eConstipation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e156\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e39\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTightness of body/ spasticity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e156\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e39\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSeizures\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e138\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e34.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDifficulty in Swallowing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e131\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e32.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSleep difficulty\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e130\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e32.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEating appetite\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e119\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e29.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCough\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e117\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e29.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIrritable\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e114\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e28.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eShortness of breath\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e111\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e27.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDrowsy\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e105\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e26.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLooseness of body/ hypotonia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e73\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e18.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePain\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e69\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e17.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eVomiting\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e64\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eChanges in skin (rash and discolouration)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e45\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e11.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBleeding\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e35\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePainful Urination\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e34\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMouth sore\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e30\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDry mouth\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e27\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eExcessive Sweating\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e20\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDiarrhoea\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e18\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eItching\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eMore than half (220, 55%) of the patients belong to the neurologic \u0026amp; neuromuscular conditions category as per the CCC categorization (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Only 40 (10%) patients belonged to the hematologic \u0026amp; immunologic conditions followed closely by the renal \u0026amp; urologic conditions (36, 9%). The least number of patients belonged to the neonatal conditions\u0026rsquo; category (4, 1%).\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eWhen classified according to the ACT/RCPCH classification, 164 (41%) patients were assigned to ACT-4, 134 (33%) to ACT-1, 54 (13.5%) to ACT-2 and 48 (12%) to ACT-3 (Fig.\u0026nbsp;\u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eIn our study [Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e], Mean age was 5.15 years while a multi-centre study conducted by Muckaden et. al. in Western India reported the average age of children at various sites as 11 years, 9 years and 6 years.\u003csup\u003e12\u003c/sup\u003e In our study, there were 59.5% males [Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e] which was similar to the studies conducted by Hayden et. al.\u003csup\u003e13\u003c/sup\u003e and Muckaden et. al.\u003csup\u003e12\u003c/sup\u003e who reported 51% and 60.6% subjects as males respectively.\u003c/p\u003e \u003cp\u003eIn our study, about 53.7% patients were malnourished with 47.6% being undernourished, 3.8% being overweight and 2.3% being obese. These finding were similar to the study conducted by Radhakrishnan et al. who found that 153 out of 295 (52%) patients were well-nourished, 130/295 (44%) patients were undernourished and 12/295 (4%) patients were obese.\u003csup\u003e14\u003c/sup\u003e With respect to the prevalence of obesity, our study findings presented a distinct contrast as compared to another study from the United States of America (USA) conducted by Orgel E et. al. which reported almost 14% obesity.\u003csup\u003e15\u003c/sup\u003e This difference could be due to the influence of socio-economic status and cultural habits on the nutritional status.\u003c/p\u003e \u003cp\u003eIn our study majority of the patients (83.3%) belonged to lower class (Modified Kuppuswamy classification). A different trend was observed in a study conducted by Kumar G et. al. where more than half of the participants belonged to the middle class.\u003csup\u003e16\u003c/sup\u003e This difference could be due to the fact that the majority of the participants in the current study were migrants from different cities and states.\u003c/p\u003e \u003cp\u003e Almost all the caregivers (99.3%) in the current study were mothers which is very similar to study conducted by Pegah Piran et. al.\u003csup\u003e17\u003c/sup\u003e in Iran where most the caregivers were the mothers. This can be explained by the traditional and cultural expectations from women to be the primary caregivers of their children.\u003c/p\u003e \u003cp\u003eIn our study the most prevalent symptoms were fatigue or lack of energy, fever, tightness of body (spasticity), constipation, seizures and difficulty in swallowing (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e). In another study done by Feudtner et. al. the most prevalent symptoms were pain, lack of energy, Irritability, drowsiness and shortness of breath.\u003csup\u003e18\u003c/sup\u003e Research from around the world shows that children suffering from life-threatening illness often report many symptoms such as fatigue, irritability, shortness of breath and pain.\u003csup\u003e19,20,21,22\u003c/sup\u003e Some authors have also reported that children with progressive conditions usually presented with behavioural symptoms such as agitation,\u003csup\u003e23\u003c/sup\u003e feeding problems,\u003csup\u003e24\u003c/sup\u003e and sleep difficulties. We also found spasticity, seizures and constipation as common symptoms which was different from other studies which could be because majority of our patients were suffering from neurological disorders while the participants in these studies were cancer patients.\u003csup\u003e19,20,21,22\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eAs per the current study, the most prevalent complex clinical conditions were neurological [220 (55%)] followed by hematological [40 (10%)], renal [36 (9%)], congenital causes [27( 6.8%)] and Malignancy [22 (5.5%)] which was nearly similar to with study conducted by Feudtner et. al. which demonstrated cardiovascular, neurological and malignancy as the most common CCC group.\u003csup\u003e18\u003c/sup\u003e Another study by Feudtner C et. al. also reported the prevalent complex chronic conditions as gastrointestinal (357 [71.3%]), neurologic (289 [57.7%]), and cardiovascular (310 [61.9%]) conditions.\u003csup\u003e25\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eThe majority (164, 41%) of the patients in the study belonged to the \u0026lsquo;Irreversible but non progressive conditions causing severe disability\u0026rsquo; (ACT-4) according to the ACT/ RCPCH. Almost 134 (33%) participants belonged to the ACT-1 category (Life-threatening conditions for which curative treatment may be feasible but can fail). As per study by Bender et. al., thirty-six percent of patients were assigned to ACT-3, 34% to ACT-4, 26% to ACT-1, and 4% to ACT-2.\u003csup\u003e26\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eThe limitation of the study was that we couldn\u0026rsquo;t compare our findings with other studies based on chronic conditions (other than malignancy) as literature regarding the same is limited. We had to rely mainly on cancer-related studies.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study provides essential insights with respect to the socio-demographic profile and symptoms of children suffering from life-limiting illnesses requiring palliative care. Patients suffering from chronic disease conditions requiring palliative care suffer from multiple symptoms which affect their daily life and knowledge of these symptoms is essential for their management. The majority of patients were male with median age 5.15 years. Most of them were from a poor financial background and are malnourished and the mothers or women of the house usually carry the entire caregiving burden. As most of our patients belong to Neurological \u0026amp; neuromuscular CCC category and ACT-4 according to ACT/RCPCH, the course of disease is prolonged and so they require holistic care \u0026amp; services for long time. It is of utmost importance for similar units to be set up to address the palliative care needs for these children.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e \u003cstrong\u003eEthics approval:\u003c/strong\u003e \u003cp\u003e 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.\u003c/p\u003e \u003c/p\u003e\u003ch2\u003eFunding:\u003c/h2\u003e \u003cp\u003eThe authors declare that no funds, grants, or other support were received during the preparation of this manuscript.\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eConcept and design of the study: P.B., S.M., P.W., P.T., J.D.; Data collection \u0026amp; analysis: P.B., S.M., P.W., P.T.; Intellectual content and interpretation: P.B., S.M., J.D.; Manuscript drafting and revisions: P.B., S.M., J.D.; Critical inputs, data accuracy and references: P.W., P.T., M.A.M., S.R. All authors contributed to the execution of the study and approve the final version.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003e Radbruch L, De Lima L, Knaul F, Wenk R, Ali Z, Bhatnaghar S, Blanchard C, Bruera E, Buitrago R, Burla C, Callaway M. Redefining palliative care\u0026mdash;a new consensus-based definition. 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Global atlas of palliative care at the end of life.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Rao KS, Vijayasekharan K, Venkatagiri AM, Ashwini S, Singhai P, Rao SR, Gupta M, Salins N. Evaluating the need for integrated pediatric palliative care services in a pediatric oncology setting: a retrospective audit. Indian Journal of Palliative Care. 2021 Apr;27(2):286.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Van Mechelen W, Aertgeerts B, De Ceulaer K, Thoonsen B, Vermandere M, Warmenhoven F, Van Rijswijk E, De Lepeleire J. Defining the palliative care patient: a systematic review. Palliative Medicine. 2013 Mar;27(3):197\u0026ndash;208.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Andersen RD. Do you see my pain? Aspects of pain assessment in hospitalized preverbal children. Inst f\u0026ouml;r neurobiologi, v\u0026aring;rdvetenskap och samh\u0026auml;lle/Dept of Neurobiology, Care Sciences and Society; 2018 May 2.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Lindley LC, Fortney CA. Pediatric complex chronic conditions: Does the classification system work for infants?. American Journal of Hospice and Palliative Medicine\u0026reg;. 2019 Oct;36(10):858\u0026thinsp;\u0026minus;\u0026thinsp;63.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Association for Children with Life-threatening or Terminal Conditions and their Families, Baum D. A guide to the development of children's palliative care services. Association for Children with Life-threatening or Terminal Conditions and their Families; 1997.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Kumar G, Dash P, Patnaik J, Pany G. Socioeconomic status scale-modified Kuppuswamy scale for the year 2022. International Journal of Community Dentistry. 2022 Jun 10;10(1):1\u0026ndash;6.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Muckaden MA, Ghoshal A, Talawadekar P, Marston JM, Paleri AK. Setting-up a Supportive and Palliative Care Service for Children with Life-threatening Illnesses in Maharashtra\u0026ndash;Children\u0026rsquo;s Palliative Care Project in India. Indian Journal of Palliative Care. 2022 Jul;28(3):236.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Hayden J, Larkin MA, Noonan H, Conroy M, Twomey F, O\u0026rsquo;Reilly V, Gallagher S. Palliative care services for children with life-limiting conditions. Irish Journal of Medical Science (1971-). 2023 Jun;192(3):1285-90.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Radhakrishnan V, Ganesan P, Rajendranath R, Ganesan TS, Sagar TG. Nutritional profile of pediatric cancer patients at Cancer Institute, Chennai. Indian Journal of Cancer. 2015 Apr 1;52(2):207-9.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Orgel E, Sposto R, Malvar J, Seibel NL, Ladas E, Gaynon PS, Freyer DR. Impact on survival and toxicity by duration of weight extremes during treatment for pediatric acute lymphoblastic leukemia: a report from the Children's Oncology Group. Journal of Clinical Oncology. 2014 May 5;32(13):1331.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Kumar G, Panda N, Roy R, Bhattacharjee G. 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 Journal of Palliative Care. 2018 Oct;24(4):496.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Piran P, Khademi Z, Tayari N, Mansouri N. Caregiving burden of children with chronic diseases. Electronic physician. 2017 Sep;9(9):5380.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Feudtner C, Nye R, Hill DL, Hall M, Hinds P, Johnston EE, Friebert S, Hays R, Kang TI, Wolfe J, Crew K. Polysymptomatology in pediatric patients receiving palliative care based on parent-reported data. JAMA Network Open. 2021 Aug 2;4(8):e2119730-.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Wolfe J, Orellana L, Ullrich C, Cook EF, Kang TI, Rosenberg A, Geyer R, Feudtner C, Dussel V. Symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST study. Journal of Clinical Oncology. 2015 Jun 6;33(17):1928.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Olagunju AT, Sarimiye FO, Olagunju TO, Habeebu MY, Aina OF. Child\u0026rsquo;s symptom burden and depressive symptoms among caregivers of children with cancers: an argument for early integration of pediatric palliative care. Annals of palliative medicine. 2016 Jul;5(3):15765-165.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Collins JJ, Devine TD, Dick GS, Johnson EA, Kilham HA, Pinkerton CR, Stevens MM, Thaler HT, Portenoy RK. The measurement of symptoms in young children with cancer: the validation of the Memorial Symptom Assessment Scale in children aged 7\u0026ndash;12. Journal of pain and symptom management. 2002 Jan 1;23(1):10\u0026thinsp;\u0026minus;\u0026thinsp;6.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Namisango E, Bristowe K, Allsop MJ, Murtagh FE, Abas M, Higginson IJ, Downing J, Harding R. 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. 2019 Feb 4;12:15\u0026ndash;55.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Malcolm C, Hain R, Gibson F, Adams S, Anderson G, Forbat L. Challenging symptoms in children with rare life-limiting conditions: findings from a prospective diary and interview study with families. Acta paediatrica. 2012 Sep;101(9):985\u0026thinsp;\u0026minus;\u0026thinsp;92.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Steele R, Siden H, Cadell S, Davies B, Andrews G, Feichtinger L, Singh M. Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions. Archives of disease in childhood. 2014 Aug 1;99(8):754\u0026thinsp;\u0026minus;\u0026thinsp;62.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Feudtner C, Feinstein JA, Zhong W, Hall M, Dai D. Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation. BMC pediatrics. 2014 Dec;14(1):1\u0026ndash;7.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e Bender HU, Riester MB, Borasio GD, F\u0026uuml;hrer M. \u0026ldquo;Let's bring her home first.\u0026rdquo; Patient characteristics and place of death in specialized pediatric palliative home care. Journal of pain and symptom management. 2017 Aug 1;54(2):159\u0026thinsp;\u0026minus;\u0026thinsp;66.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"european-journal-of-pediatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ejpe","sideBox":"Learn more about [European Journal of Pediatrics](https://www.springer.com/journal/431)","snPcode":"431","submissionUrl":"https://submission.nature.com/new-submission/431/3","title":"European Journal of Pediatrics","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"Palliative Care, Complex chronic condition, life limiting conditions, holistic care","lastPublishedDoi":"10.21203/rs.3.rs-4576808/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4576808/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eIntroduction/ Background\u003c/strong\u003e: Pediatric palliative care is a holistic care of children suffering from life threatening or life limiting illnesses and encompasses care of a child’s body, mind, spirit and also 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 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.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eObjectives\u003c/strong\u003e: 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.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMaterials and methods\u003c/strong\u003e: The study was conducted as a single centre 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 was 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.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e: Mean age in our study was 5.15 years and there was slighter male (59.5%) preponderance. \u0026nbsp;They presented in OPD’s with acute symptoms such as fatigue and fever \u0026amp; they had other symptoms like tightness of 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 most common category according to the ACT/RCPCH.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion\u003c/strong\u003e: Childrensuffering 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 irreversible but non-progressive life limiting condition, the course of disease is prolonged; therefore requiring comprehensive care \u0026amp; services for long time. It is necessary to establish more pediatric palliative care units to address the needs of such children.\u003c/p\u003e","manuscriptTitle":"Clinical \u0026amp; Socio-demographic profile of children receiving Pediatric Palliative Care in a tertiary hospital of a Metropolitan city in India","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-07-26 16:53:30","doi":"10.21203/rs.3.rs-4576808/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-07-23T13:10:03+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-07-23T12:20:40+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"12207316738914812819211723567829440638","date":"2024-07-22T08:32:20+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"198523387019590519196739091224205002143","date":"2024-07-11T18:47:25+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-07-03T15:18:35+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"106388908154783046222165602660933749097","date":"2024-07-03T14:59:35+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-07-03T14:09:27+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-07-03T08:48:17+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-07-03T00:39:53+00:00","index":"","fulltext":""},{"type":"submitted","content":"European Journal of Pediatrics","date":"2024-06-13T14:19:34+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"european-journal-of-pediatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ejpe","sideBox":"Learn more about [European Journal of Pediatrics](https://www.springer.com/journal/431)","snPcode":"431","submissionUrl":"https://submission.nature.com/new-submission/431/3","title":"European Journal of Pediatrics","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"b91039ae-9dce-462d-81c7-ec5645861a7a","owner":[],"postedDate":"July 26th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2024-09-16T15:59:21+00:00","versionOfRecord":{"articleIdentity":"rs-4576808","link":"https://doi.org/10.1007/s00431-024-05741-x","journal":{"identity":"european-journal-of-pediatrics","isVorOnly":false,"title":"European Journal of Pediatrics"},"publishedOn":"2024-09-13 15:57:02","publishedOnDateReadable":"September 13th, 2024"},"versionCreatedAt":"2024-07-26 16:53:30","video":"","vorDoi":"10.1007/s00431-024-05741-x","vorDoiUrl":"https://doi.org/10.1007/s00431-024-05741-x","workflowStages":[]},"version":"v1","identity":"rs-4576808","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4576808","identity":"rs-4576808","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}