• Pia Schmidt, Michael Otto, Tanja Hechler, Sabine Metzing, Joanne Wolfe, and Boris Zernikow.
• 1 Paediatric Palliative Care Centre, Children's and Adolescents' Hospital Datteln, Department of Children's Pain Therapy and Paediatric Palliative Care Witten/Herdecke University , Datteln, Germany .
• J Palliat Med. 2013 Sep 1;16(9):1034-9.

BackgroundAwareness for pediatric palliative care in children with cancer increased in the last ten years in Germany. In this study we sought to determine whether this change in awareness led to improved palliative care outcomes in children dying due to cancer.MethodsIn 2005 we interviewed a cohort of 48 bereaved parents who had a lost a child to cancer approximately five years earlier (2000 cohort), and in 2010 we interviewed another cohort of 48 parents who had lost a child due to cancer approximately five years before (2005 cohort). Children of the 2000 cohort were cared for by six specialized oncology departments in North-Rhine-Westphalia (NRW), Germany, and children of the 2005 cohort by 16 specialized pediatric oncology departments in NRW, Germany. Parents of both cohorts were interviewed using the Survey of Caring for Children with Cancer (SCCC).ResultsThe children of both parental cohorts were similar in terms of disease characteristics and sociodemographic variables. Children suffered in a very similar manner from core symptoms such as pain and dyspnea. However, symptom treatment increased for all symptoms. In case of treatment of anxiety the increase was statistically significant (p=0.035). Location of care changed with almost three-quarters of the 2005 cohort receiving palliative home care, significantly more than in the 2000 cohort (p=0.007). Additionally, fewer children of the 2005 cohort died in the intensive care unit.ConclusionWhile the location of care during the end-of-life period shifted (from hospital to home), there remains substantial work to ease the suffering in children with cancer at end of life.

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