Approaching the Necessity of Pediatric Palliative Care in Colombia: A challenge for the Health System. A Retrospective Cross Sectional Study.

Background: Pediatric Palliative Care (PPC) focuses on achieving quality of life and control the symptoms for children during the sickness process, also provide support to the family in order to relief suffering and give response to needs assessment. In Colombia, this subspecialty does not exist, as a result of not having clinic practice guides and information about the population who benet under 18 years of age. This study is to approach the necessity of PPC in our country, dening a methodology to characterize and estimate prevalence of pediatric population who may need special care in order to develop an attention model. Methods: A retrospective descriptive study was conducted among 80,926 members between 0 and 18 years of age who has a private health insurance in Colombia between January 1, 2016 and December 31, 2018. Data was obtained from the insurance transactional database. Patients were grouped based on the Association for children with life threatening conditions and their families (ACT) of the Royal College of Pediatrics four classications plus perinatal group. Results were processed and analyzed using descriptive statistical functions in Microsoft Excel. Results: 1,694 patients (2,09%) were eligible to enter a PPC program according to their IDC-10 diagnoses based on ACT plus Perinatal Group classication. Approximately 54% were male, 57.97% were considered early childhood, 26.56% childhood and 15,47% adolescence. With regards to ACT classication and Perinatal Group; 55.55% of patients had diagnosis from Perinatal Group (55.55%) followed by group 4 (23.2%) and group 1 non-cancer (9.68%). Conclusion: Being able to identify patients in need of PPC programs early may increase it being utilize at the time of diagnosis and not wait till the end of life. This might also help alleviate misconception of PPC only being offered during the end of life period. This study should help with the development of public and private politics aimed to promote the creation of PPC programs in developing countries.

Conclusion: Being able to identify patients in need of PPC programs early may increase it being utilize at the time of diagnosis and not wait till the end of life. This might also help alleviate misconception of PPC only being offered during the end of life period. This study should help with the development of public and private politics aimed to promote the creation of PPC programs in developing countries.

Background
World Health Organization (WHO) de ned 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 bene t from PPC, however, receipt of PPC is not uniform, being in uenced by development, infrastructure and complexity of sanitary services of a country 1 Children and adolescents who may bene t 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 certi ed 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 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 brosis. 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 fth 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 rst 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. 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 certi cation 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 de ne 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.

Study design and population
A descriptive study was conducted among individuals between 0 and 18 years of age who has a private health insurance in Colombia between January 1, 2016 and December 31, 2018.

Sampling and variables
The study population was obtained from the insurance transactional database. The insurance company's databases have a periodic quality audit process in order to guarantee that the nal entered information is reliable. Patients were identi ed using the International Classi cation of Diseases, Tenth Revision, (ICD-10) codes. Patients were grouped based on the ACT 5 of the Royal College of Pediatrics four classi cations plus perinatal Perinatal Group. ICD-10 codes corresponding to benign tumors and tumors in adjacent locations (n = 196) that did not affect the quality of life of the patients were excluded. The IDC-10 diagnoses included and excluded in each ACT groups are presented in Table 1. Sociodemographic variables (age, gender, and region) were included. The geographical region of origin was de ned according to the regional o ce where the health policy was subscribed. Table 1 IDC-10 code classi cation of diagnoses according to ACT grouping plus group 5.

Data Analysis
Prevalence of diagnoses was strati ed by age groups following the healthcare integrated routs (Rutas Integradas de Atención en Salud in Spanish, "RIAS") classi cation of pediatric population, which categorizes as "early childhood" ages between 7 days and 5 years, "childhood" ages between 6 and 11 years, and adolescence between 12 and 18 years of age. The frequency of diagnoses in each ACT group plus Perinatal Group were analyzed. Diagnoses with frequencies of two or less were combine and categorized as "others". Distribution by diagnosed related group according to the type of pathology and affected system was also reported. Results were processed and analyzed in Microsoft Excel.

Ethical considerations
This study was classi ed as an investigation with minimum risk according to the Colombian Ministry of Health resolution 8430 of 1993 article 11. This was an analysis of a secondary data. Con dentiality of patients was protected, following the personal data protection policy of the insurance company. Only information that will help improve the risk assessment models of the covered population were obtained.

Results
Between  Early childhood patients were more prevalent within Perinatal Group. Adolescents were in the rst place of prevalence in group 1 Oncological, and the second place was for group 4 with an 8.91% (Fig. 1).

Discussion
To our knowledge, this is the rst study the implementation of ACT criteria and IDC-10 diagnoses that are associated with life-limiting and life-threatening conditions in the general pediatric population in Colombia. The ndings from this study will allow the identi cation of children who are eligible for PPC, which aims to individualize health necessities in accordance to its level of risk.
We determine the prevalence of children in need of PPC to be 2.09% out of a total of 80,926 members under 18 years of age. Tirado  It is a national challenge to create a PPC program because it has not been widely implemented around the world and the misconception that PPC are needed only at the end of life. In Pediatrics, the program must be developed in children with acute and chronic pathologies without classifying them according to the probability index of dying within the next year. The proper derivation and development of PPC programs will have positive impact on patients, relatives and healthcare organizations due to reduced hospital admittance and unnecessary emergency visits. Comparative studies in this respect will be important once PPC programs are up and running.

Limitations
No other characteristics in the intervention levels such as variety of diagnosis of unpredictable duration, rare diseases, etc. were contemplated in this study. A group of characteristics to have in mind like speci c medication availability, maturity aspects of the population which affect communication, education and support, the role of the family, the social, emotional and communitarian impact and the handling of grief were considered. The scarcity of studies on samples of patients susceptible of PPC and the implementation of these criteria has also been a limitation when comparing prevalence because despite contrasting some populations with the ACT groups, the variability in the inclusion of diagnoses of each group has not been identi ed. Therefore, it is adequate to identify the pathologies in each subgroup