Introduction: Medical and technological progress allows newborns, children and teenagers suffering from life-limiting and life-threatening illness to survive, but not necessarily to recover. Data on the number of children eligible for pediatric palliative care [PPC] and their needs are useful for health care planning. The main aim of this study was to ascertain the prevalence and the course of children eligible for pediatric palliative care in Italy.
Methods: The data source considered was the hospital discharge records (HDR), containing information on the children's diagnosis, their personal and clinical details, hospital admissions, procedures and discharge. The list of diseases eligible for PPC was based on the ICD IX CM list, according to ACT criteria. All records of hospital admissions in Italy for the years 2001-2003 were processed. The first step was to identify hospital admissions involving individuals 0-17 years old with at least one of the selected life-limiting and life-threatening illnesses. The main features of these hospital admissions were described in terms of duration, frequency, and discharge arrangements, estimating the number of patients eligible for PPC and the number of deaths occurring in hospital.
Results: The total number of hospital admissions concerning patients aged 0-17 years amounted to 3,578,649. Our restrictive criteria identified 323,415 hospital admissions in 3 years relating to diseases eligible for pediatric palliative care, which involved approximately 12,000 children. The most common diseases fell respectively into the following sectors: perinatal, neurological, neoplastic and congenital diseases. The number of days spent in hospital for diseases eligible for PPC ranged from 556,075 days/year to 591,983, and concerned 35,000 children every year.
Conclusions: Our data agree with other international surveys on the prevalence and typology of pediatric patients. The HDR could be useful for the estimation of the cases eligible for pediatric palliative care and for monitoring of deaths in hospital.