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Pediatric Patients Receiving Specialized Palliative Home Care According to German Law: A Prospective Multicenter Cohort Study

Department of Pediatrics, University Hospital Carl Gustav Carus, Technische Universität Dresden, Fetscherstrasse 74, 01307 Dresden, Germany
Department of Children’s Pain Therapy and Pediatric Palliative Care, Faculty of Health, School of Medicine, Witten/Herdecke University, 58455 Witten, Germany
Paediatric Palliative Care Centre, Children’s and Adolescents’ Hospital, 45711 Datteln, Germany
Author to whom correspondence should be addressed.
Children 2018, 5(6), 66;
Received: 2 May 2018 / Revised: 26 May 2018 / Accepted: 28 May 2018 / Published: 31 May 2018
(This article belongs to the Special Issue 5th Anniversary Issue)
In Germany, every child with a life-limiting condition suffering from symptoms that cannot sufficiently be controlled is eligible by law for specialized pediatric palliative home care (SPPHC). It is the aim of this study to describe the demographic and clinical characteristics of children referred to SPPHC and to compare patients with cancer and non-cancer conditions. The prospective multicenter study includes data on 75 children (median age 7.7 years, 50.7% male). The majority had non-cancer conditions (72%). The most common symptoms were cognitive impairment, somatic pain, impairment in communication or swallowing difficulties. Swallowing difficulties, seizures, and spasticity occurred significantly more often in non-cancer patients (p < 0.01). Cancer patients received antiemetics significantly more often (permanent and on demand) than non-cancer patients (p < 0.01). Significantly more non-cancer patients had some type of feeding tube (57.3%) or received oxygen (33.3%) (p < 0.01). Central venous catheters had been fitted in 20% of the patients, mostly in cancer patients (p < 0.001). Tracheostomy tubes (9.3%) or ventilation (14.7%) were only used in non-cancer patients. In conclusion, patients referred to SPPHC are a diverse cohort with complex conditions including a large range of neurologically originating symptoms. The care of pediatric palliative care patients with cancer is different to the care of non-cancer patients. View Full-Text
Keywords: palliative care; pediatrics; cancer; non-cancer; home care palliative care; pediatrics; cancer; non-cancer; home care
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Nolte-Buchholtz, S.; Zernikow, B.; Wager, J. Pediatric Patients Receiving Specialized Palliative Home Care According to German Law: A Prospective Multicenter Cohort Study. Children 2018, 5, 66.

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