Approaching the necessity of pediatric palliative care in Colombia: a challenge for the health system.

: 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 benefit under 18 years of age. This study is to approach the necessity of PPC in our country, defining 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 classifications 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 group 5 classification. Approximately 54% were male, 57.97% were considered early childhood, 26.56% childhood and 15,47% adolescence. With regards to ACT classification and group 5; 55.55% of patients had diagnosis from group 5 (55.55%) followed by group 4 (23.2%) and group 1 non-cancer (9.68%). 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.


Declarations:
This study was classified 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. Personal data protection policy of the insurance company was apply.
Authors declared not having any conflict of interest about the study. A private insurance company from Colombia sponsored study. 4

Background
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. 1 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 2 . 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 country 1 Children and adolescents who may benefit from palliative care is 15 per 10,000 inhabitants as of 2007 3 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 4 .
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 process 2 .
Association for children with life threatening conditions and their families (ACT) 5  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. Group 5 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 6

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 final entered information is reliable. Patients were identified using the International Classification of Diseases, Tenth Revision, (ICD-10) codes. Patients were grouped based on the ACT 5 of the Royal College of Pediatrics four classifications plus perinatal group 5. 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 defined according to the regional office where the health policy was subscribed.

Data Analysis
Prevalence of diagnoses was stratified by age groups following the healthcare integrated routs (Rutas Integradas de Atención en Salud in Spanish, "RIAS") classification of pediatric population 10 , 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 group 5 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 classified 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. Confidentiality 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 January 2016 and December 2018, 80,926 members under 18 years of age were insured by the insurance company. Of these, 1,694 patients (2,09%) were eligible to enter a PPC program according to their IDC-10 diagnoses based on ACT plus group 5 classification.
Early childhood patients were more prevalent within group 5. Adolescents were in the first place of prevalence in group 1 Oncological, and the second place was for group 4 with an 8.91% (Fig 1).  The most frequent diagnosis in the study population was "others preterm newborn" found in 767 children (45.28%), followed by Epilepsy found in 284 (16.77%), low birth weight in 62 (3.66%) and Hematopoietic cancer in 47 patients (2.77%) [ Table 3]. Cardiopathies (9%).
Finally, group 2 was the least represented with a 2,24% which is consistent with findings by Tirado and Zarate 12 in which both groups 2 and 3 represented 3.3%.
Were found that diagnoses that require PPC by ACT group and group 5 were heterogeneous and thus, additional studies are required in order to observe the tendency by age groups and