title: Outcome measures in European patients with haemophilia: Survey of implementation in routine clinical practice, perception of relevance and recommendations by European treaters in the EHTSB.
abstract: BACKGROUND
  This study was conducted to evaluate the current implementation of outcome measures in routine clinical haemophilia practice and to explore and appreciate the perception of the relevance of such measures by treaters.
  
  
  METHODS
  A survey was completed by 19 of the 26 physicians involved in the European Haemophilia Therapy Strategy Board (EHTSB). Employing an extensive inventory of outcome measures used in patients with haemophilia, information was collected about the frequency of data collection and the subjective appreciation of their importance during clinic review.
  
  
  RESULTS
  The survey revealed that most treaters currently collect data that are mainly related to the haemostatic treatment (consumption of concentrates) and the bleeding symptoms (number and location of bleeds) in a non-uniform and non-standardized way. By contrast, functional, physical and quality of life scorings are rarely used and show considerable heterogeneity between treaters. Also, many disparities emerged between practice and perception, in particular quality of life data that are perceived as being important but for most of the time are not collected.
  
  
  CONCLUSIONS
  This survey represents, in our view, the first attempt to evaluate the actual utilization of outcome measures in haemophilia care. While the value of outcome measures is appreciated, they are not assessed regularly. Therefore, there is a need to include appropriate performance indicators (outcome measures) of haemophilia care in routine clinical practice. Consensus recommendations to provide a framework for achieving this aim are provided.
authors: Haemostasis and Thrombosis Unit, Division of Haematology, Cliniques universitaires Saint-Luc, Catholic University of Louvain, Brussels, Belgium.
authors: C
authors: C
authors: Hermans
authors: Klinik für Innere Medizin, Hämophiliezentrum, Vivantes-Klinikum in Friedrichhain, Berlin, Germany.
authors: R
authors: R
authors: Klamroth
authors: Paediatric Haematology Department, Children's Day Hospital, St James University Hospital, Leeds, UK.
authors: M
authors: M
authors: Richards
authors: Départment de Medicine Interne, Unité d'Hémostase, Hôpital Cantonal, Geneva, Switzerland.
authors: P
authors: P
authors: de Moerloose
authors: Unidad de Hemofilia, Hospital Virgen del Rocio, Seville, Spain.
authors: R P
authors: RP
authors: Garrido
mesh_terms: D005060:Europe; D006467:Hemophilia A; D006801:Humans; D017063:Outcome Assessment, Health Care; D011795:Surveys and Questionnaires
keywords: haemophilia; outcome measures; perception; survey