Clinical and socio-demographic profile of children receiving pediatric palliative care in a tertiary hospital of a metropolitan city in India

Abstract

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, 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 years 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. Conclusion: 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. 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 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).