Abstract
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.
Highlights
In recent years, profound developments and improvements in the field of palliative care have taken place in Germany
This study aimed to identify differences between non-cancer and cancer patients
Life-limiting conditions who are referred to a palliative care service, as well as their families, commonly verbalize goals related to health maintenance and independence [9]. These results indicate that care goals in pediatric palliative care are focused on end-of-life care and on life-prolonging measures, such as feeding patients with a feeding tube
Summary
Profound developments and improvements in the field of palliative care have taken place in Germany. Since 2007, a new law has guaranteed access to specialized (tertiary) palliative home care (SPHC) for children and adults with a life-limiting disease suffering from symptoms that cannot sufficiently be controlled in primary or secondary care. If these conditions are fulfilled and approved by the insurance company the patient has the right to receive SPHC. The law provides quality criteria for the composition of SPHC, e.g., a certified qualification of team members and a close collaboration between specialized palliative care nurses and physicians. The costs for SPHC, whether taking place in the patient’s
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
