Palliative care in children with spinal muscular atrophy type 1: how do they die? Results from a French multicentric study (National Hospital Clinical Research Program)

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The national Hospital Clinical Research Program (PHRC) called « Assessment of clinical practices of palliative care in children with Spinal Muscular Atrophy Type 1 » was conducted to depict palliative practices in that fatal disease, in which death up to now occurs soon after the diagnosis. We here report data about the conditions of death for the patients included. In this French multicentric study, patients were included from june 2012 to June 2016. Parents and physicians filled in a specific health book during the follow up, the physician in charge filled in a survey concerning the patient’s management over the last 48 hours before death, then a semi-directed interview of the parents was conducted 6 to 18 months after the child’s death.

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