title: [Patient-Centred Care of Ocular Graft-vs-Host Disease in Germany].
abstract: BACKGROUND
  Ocular GvHD is a severe complication following allogenic blood stem cell transplantation leading to massive reduction in quality of life and ocular pathologies including corneal perforation. Interdisciplinary patient-centred care needs to be performed in specialized ophthalmic centers that provide all diagnostic and therapeutic options, however, only few clinics have the necessary infrastructure. In addition there is a lack of transparency and easily accessible information for the patients regarding ophthalmic care and specialized centres. For this reason the "Ocular GvHD working group" within the Cornea Section of the German Society of Ophthalmology has been founded to evaluate and improve patient-centered care in ocular GvHD within Germany.
  
  
  METHODS
  A survey was performed among the members of the Cornea Section of the German Society of Ophthalmology and the Directors of Departments of Ophthalmology in Germany that evaluated the number of annual examinations, presence of specialized GvHD outpatient clinics and eye screenings prior to allogenic blood stem cell transplantation (aBSCT).
  
  
  RESULTS
  25 clinics (19 university hospitals, 6 general hospitals) responded to the survey. In 18 clinics aBSCT are performed. Between 5 and 200 patients after aBSCT are examined per year per clinic. Larger institutions are associated with departments of haemato-oncology and other specialised disciplines to facilitate an interdisciplinary patient care. Three clinics are associated with GvHD competence centres. The major challenge in establishing an appropriate infrastructure for better patient-centered care is the limited or lacking reimbursement by health insurances.
  
  
  CONCLUSIONS
  Within Germany only few ophthalmic centres exist that provide state-of-the-art patient-centered care for ocular GvHD. The present structures are not sufficient to treat all patients undergoing aBSCT following existing guidelines. Joint efforts are necessary to establish more and accessible competence centers for ocular GvHD with sufficient personnel and structural resources. In addition, ocular GvHD should be included as a mandatory topic in medical training and transparent and easily accessible information needs to be provided for patients and health-care professionals.
authors.affiliation: Klinik für Augenheilkunde, Universitätsklinikum Freiburg.
authors.forename: P
authors.initials: P
authors.lastname: Eberwein
authors.affiliation: Klinik und Poliklinik für Augenheilkunde, Universitätsklinikum Regensburg.
authors.forename: T
authors.initials: T
authors.lastname: Dietrich-Ntoukas
authors.affiliation: Zentrum für Augenheilkunde, Universitätsklinikum Essen.
authors.forename: H
authors.initials: H
authors.lastname: Westekemper
authors.affiliation: Kompetenzzentrum Okuläre GvHD, Zentrum für Augenheilkunde, Uniklinik Köln.
authors.forename: C
authors.initials: C
authors.lastname: Cursiefen
authors.affiliation: Kompetenzzentrum Okuläre GvHD, Zentrum für Augenheilkunde, Uniklinik Köln.
authors.forename: P
authors.initials: P
authors.lastname: Steven
mesh_terms: D002983:Clinical Competence; D003299:Cooperative Behavior; D005128:Eye Diseases / Q000209:etiology / Q000628:therapy*; D005858:Germany; D006086:Graft vs Host Disease / Q000209:etiology / Q000628:therapy*; D018380:Hematopoietic Stem Cell Transplantation / Q000009:adverse effects*; D006801:Humans; D033183:Interdisciplinary Communication; D009313:National Health Programs; D018802:Patient-Centered Care; D012051:Reimbursement Mechanisms; D011795:Surveys and Questionnaires; D062606:Tertiary Care Centers