Children with medical complexity and paediatric palliative care: data by
a respiratory intermediate care unit
Abstract
Pediatric palliative care (PPC) is an active and total approach to the
care of children with life-limiting conditions and to their families.
PPC programs provide ongoing care for children with medical complexity
(CMC), many of whom will reach adulthood. The aim of the study is to
describe a population of CMC afferent in 4 months to the Intermediate
Care Unit of a tertiary referral hospital for southern and central
Italy. We enrolled all CMC patients admitted at our unit in 4 randomized
months. We registered pathologies and different categories of childhood
diseases, devices and needs, hospitalization and home care plan. Among
195 admitted to our unit, 87 CMC were included. Median age was 9 (0.1 –
35.7) years. The main pathologies recorded were neuromuscular,
neurological, respiratory, metabolic, malformative, genetic syndromes
and outcomes of prematurity. Comorbidity made by respiratory, digestive,
neurological, cardiac and urological involvement was present in a high
percentage of cases. Among our patients, only 24 hadn’t any devices. The
average length of hospitalization was 7.0 (1.0 – 270.0) days with 2
(1.0 – 7.0) admissions per year for patient. Home care activation was
not required for only 24 of 87 patients. Children eligible for CPP are
increasing and their survival results in a rise in comorbidities and
special needs demanding multi-level interventions. Respiratory symptoms
are the most recurrent observed demonstrating the need for an expert in
CPP to have respiratory skills. Sharing data and knowledge of CMC needs
may help to improve care coordination and interventions.