Children with medical complexity and paediatric palliative care: a retrospective cross-sectional survey of prevalence and needs

BACKGROUND: Children with medical complexity (CMC) have been defined (Cohen et al., Pediatrics 127: 529–538, 2011.) as an emerging population potentially eligible for PPC. The current study investigated the prevalence of children with medical complexities eligible for a local palliative care network, including a paediatric hospice. METHODS: A retrospective cross-sectional survey has been conducted using children clinical charts from 14 local health authorities of our region (Emilia Romagna, Italy). RESULTS: The total number of children with life-limiting conditions was 601, with a mean age of 7.4 ± 4.8 years, a prevalence of 8.4/10.000 residents < 19 years of age and a heterogeneous presentation among the provinces in the region. Neurological diseases affect 51% of patients, followed by congenital diseases (21%) and pathologies originating in the perinatal period (6%), while only 4% of the patients had a cancer diagnosis. Patients are dependent from many devices and supports: 32% had a gastrostomy, 22% a respiratory support and 15% of patients had both of them. CONCLUSIONS: Observed regional prevalence of complex needs is lower than that published from other European countries. More research is needed to raise awareness of palliative care for children with medical complexities in order to address specific needs.