Beatrix Cucuruz1, Michael Koller2, Ronja Pfleiderer3, Urban Geisthoff4, Lutz Meyer5, Friedrich Kapp6, Werner Lang7, Thomas Schmitz-Rixen8, Walter A Wohlgemuth9. 1. University Clinic and Policlinic of Radiology at the Martin-Luther-Universität Halle-Wittenberg, Halle, Germany. 2. Center for Clinical Studies, University Hospital Regensburg, Regensburg, Germany. 3. German Interdisciplinary Society for Vascular Anomalies e.V., Halle, Germany. 4. Department of Otorhinolaryngology, Head and Neck Surgery, Marburg University Hospital, Marburg, Germany. 5. Center for Vascular Malformations Eberswalde (ZVM), Werner Forßmann Hospital, Eberswalde, Germany. 6. Department of Pediatric Hematology and Oncology, University Medical Center Freiburg, Freiburg, Germany. 7. Vascular Surgery, University Hospital Erlangen, Erlangen, Germany. 8. Institute for Transfusion Medicine and Immunohaematology Frankfurt/Main, Frankfurt/Main, Germany. 9. University Clinic and Policlinic of Radiology at the Martin-Luther-Universität Halle-Wittenberg, Halle, Germany. Electronic address: walter.wohlgemuth@uk-halle.de.
Abstract
BACKGROUND: Vascular anomalies are orphan diseases that occur in all age groups and range from purely aesthetic to potentially life-threatening conditions. This thesis paper outlines the typical conferring problems in patient management and possible structural solutions for a better patient treatment in the future. METHODS: A multi-perspective author panel consisting of key stakeholders from the German Interdisciplinary Society of Vascular Anomalies and the German Society for Surgery defined problem areas and possible solutions including quality indicators as criteria for certified interdisciplinary Vascular Anomalies Centers (VAC). RESULTS: According to the literature available, clearly defined nomenclature and nosological entities often remain unused in this field, and consented diagnostic and therapeutic evidence is rare. Expert opinions dominate and in some cases lead to disparate recommendations. Typical patient problems arise from this situation, exemplified in patient vignettes. Centralized and standardized patient treatment in interdisciplinary VAC may be a solution to this problem. These centers should agree on a set of general principles and quality indicators with an additional minimum set of structural and procedural criteria. DISCUSSION: The present position paper outlines perspectives for implementing certified interdisciplinary VAC. There is a need for a comprehensive nomenclature, access to interdisciplinary treatment centers, more scientific evidence, and further education in this rare group of diseases. CONCLUSION: Use of scientifically sound and patient-relevant criteria for certifying the interdisciplinary quality of VAC is expected to improve health care in Germany.
BACKGROUND: Vascular anomalies are orphan diseases that occur in all age groups and range from purely aesthetic to potentially life-threatening conditions. This thesis paper outlines the typical conferring problems in patient management and possible structural solutions for a better patient treatment in the future. METHODS: A multi-perspective author panel consisting of key stakeholders from the German Interdisciplinary Society of Vascular Anomalies and the German Society for Surgery defined problem areas and possible solutions including quality indicators as criteria for certified interdisciplinary Vascular Anomalies Centers (VAC). RESULTS: According to the literature available, clearly defined nomenclature and nosological entities often remain unused in this field, and consented diagnostic and therapeutic evidence is rare. Expert opinions dominate and in some cases lead to disparate recommendations. Typical patient problems arise from this situation, exemplified in patient vignettes. Centralized and standardized patient treatment in interdisciplinary VAC may be a solution to this problem. These centers should agree on a set of general principles and quality indicators with an additional minimum set of structural and procedural criteria. DISCUSSION: The present position paper outlines perspectives for implementing certified interdisciplinary VAC. There is a need for a comprehensive nomenclature, access to interdisciplinary treatment centers, more scientific evidence, and further education in this rare group of diseases. CONCLUSION: Use of scientifically sound and patient-relevant criteria for certifying the interdisciplinary quality of VAC is expected to improve health care in Germany.