World Health Organization (WHO) defined Pediatric Palliative Care (PPC) in 1998 as the total and active care of the body, mind and spirit of a child with a disease that threatens and/or limits his/her life. This care is focused on patients and their family by providing support in order to relief suffering and improve quality of life in both. PPC must be implemented from diagnosis and continue along the disease’s trajectory independently of its outcome, and extended beyond the child’s death to include the mourning process. WHO estimates that 21,6 million children benefit from PPC, however, receipt of PPC is not uniform, being influenced by development, infrastructure and complexity of sanitary services of a country1 Children and adolescents who may benefit from palliative care is 15 per 10,000 inhabitants as of 2007 The development of PPC has emerged due to focus on improving the needs of children with complex chronic and life threatening diseases through an integrated multidisciplinary team (pediatricians, nurses, social workers, psychologists, counselors etc) which ideally includes a pediatrician specialized in palliative care, a certified nurse, a social worker, a psychologist and a spiritual counselor trained in palliative care to offer a coordinated attention focused on the multidimensional care that these patients and their families require.
PPC must be early referral from the diagnosis moment and continue along the disease’s trajectory independently of its outcome, being extended beyond the child’s death and assisting the mourning process2.
Association for children with life threatening conditions and their families (ACT) of the Royal College of Pediatrics and Children’s Health in the United Kingdom (RCPCH) developed a classification that categorizes life-limiting and life- threatening conditions of children in 4 groups which may require PPC. Group 1 deals with conditions where treatment is feasible but may fail such as childhood cancer. Group 2 entails conditions which require prolonged treatments to improve quality of life but would be fatal if treatment is aborted such as cystic fibrosis. Group 3 involves progressive conditions where treatment is unavailable and therefore palliative care are the only option such as spinal muscular atrophy. Group 4 includes non-progressive irreversible severe neurological compromise which leads to high necessity of care and complications make them susceptible to premature death.
Additionally, a fifth group has been developed due to an increase of premature births and consequently increase in prenatal, neonatal and perinatal affections. Perinatal Group entails patients that require special care in their first months of life due to perinatal or neonatal diagnosis and make them susceptible to continuous care and follow-up such as low birth weight and prematurity.
National legislation 1733 on palliative care was created in Colombia in September 2014. The Palliative care national clinic practice guide was published and socialized in 2016 excluding population under 18 years of age, resulting in PPC not being included. This is concerning considering that the National Administrative Department of Statistics (Departamento Administrativo Nacional de Estadística - DANE) estimated national childhood mortality was 16,80 deaths/1000 for children under one year of age in 2016 (Series 2005–2016). An analysis of 2018 Colombia’s health situation revealed that between 2005 and 2017, an average of 8,625 childhood deaths and 5,494 neonatal deaths yearly were registered. Affections occurring in perinatal period generated nearly 50% of the mortality in under one-year-old. Secondly, the report stated that congenital malformations, deformities and chromosomic anomalies caused nearly 23%, respiratory diseases caused about 8%, and infectious and parasitic diseases caused 5% of deaths.
Colombia does not have enough Palliative Pediatricians as a result of not having a palliative care subspecialty in medical schools, and obstacles faced with board certification by the National Ministry of Education. Seguros SURA is a private insurance company in Colombia with 365,000 members, of which 81,000 are under 18 years. Prevalence of diseases that will require PPC among individuals < 18 years are unknown. The objective of this study was to define a methodology to estimate the prevalence of the pediatric population who may need PPC and to characterize this population in order to develop a PPC attention model.