title: [Data on palliative care in Germany : Which data sources are available and what do they tell?]
abstract: Palliative care is more and more in the focus of politics and the public. Although provision and utilization of palliative care have increased considerably in recent years, there is still a great need for palliative services and a comprehensive supply has not yet been achieved. Reliable and continually available data are indispensable to describe developments in Germany, to identify existing gaps in palliative care provision, and to assess the impact of relevant policies. In this article, we present a systematic outline of publicly available data sources on palliative care in Germany and point out their potentials and limitations. We show that mainly data on palliative care provision are available. Data on utilization are basically limited to inpatient and specialized outpatient palliative care ("spezialisierte ambulante Palliativversorgung", SAPV). Periodical analyses of routine data, e. g. from statutory health insurances or from the Association of Statutory Health Insurance Physicians, would be helpful to fill these data gaps. Monitoring the sociodemographic characteristics of users of palliative care could also be of major interest. Another important indicator is the place of death. The difference between the places where people die and where they wish to die indicates that there is a continuous need to strengthen outpatient structures of palliative care.
authors.affiliation: Abteilung für Epidemiologie und Gesundheitsmonitoring, Robert Koch-Institut, General-Pape-Straße 62, 12101, Berlin, Deutschland. PruetzF@rki.de.
authors.forename: Franziska
authors.initials: F
authors.lastname: Prütz
authors.affiliation: Abteilung für Epidemiologie und Gesundheitsmonitoring, Robert Koch-Institut, General-Pape-Straße 62, 12101, Berlin, Deutschland.
authors.forename: Anke-Christine
authors.initials: AC
authors.lastname: Saß
mesh_terms: D016208:Databases, Factual / Q000706:statistics & numerical data*; D057286:Electronic Health Records / Q000706:statistics & numerical data; D019317:Evidence-Based Medicine; D005858:Germany / Q000453:epidemiology; D006297:Health Services Accessibility / Q000706:statistics & numerical data*; D006801:Humans; D009313:National Health Programs / Q000706:statistics & numerical data; D010166:Palliative Care / Q000706:statistics & numerical data*; D010342:Patient Acceptance of Health Care / Q000706:statistics & numerical data*; D011159:Population Surveillance; D019452:Terminally Ill / Q000706:statistics & numerical data*; D014600:Utilization Review / Q000706:statistics & numerical data*
keywords: Data; Dying; Hospice; Palliative care; Palliative medicine