Inborn errors of metabolism in pediatric palliative care

Article indépendant

HARPUTLUOGLU, Nilgün | KOSE, Melis | YILMAZ, Ünsal | CELIK, Tanju

BACKGROUND: In parallel with the increase in the number of children with life-limiting or threatening diseases, the need and right of pediatric palliative care also increases. In this study, it was aimed to examine the metabolic diseases, evaluate the symptoms and review the needs in children who were admitted to the pediatric palliative care service. METHODS: Following the approval of the local ethics committee (18/7/2019-107), the computer records of patients hospitalized in the pediatric palliative care service between 01.12.2018-01.6.2019 were reviewed retrospectively. Dr Behçet Uz Children's Hospital is a tertiary hospital and pediatric palliative care has 1 year experience. RESULTS: In the study period, there were 101 patients who were hospitalized in the pediatric palliative care service. Eighteen patients (19.7%) diagnosed with inborn errors of metabolism were included in the study. The average age was 3.2 ± 2.1 (0-8) years. Although it could not be shown statistically, the duration of hospitalization of patients with congenital malformation was long. CONCLUSION: Pediatric palliative care provides the best care with the control of various symptoms in neurodegenerative congenital metabolic diseases that do not have treatment or treatment, but progressive symptoms cannot be prevented.

http://dx.doi.org/10.1111/ped.14660

Voir la revue «Pediatrics international»

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