title: Key-interventions derived from three evidence based guidelines for management and follow-up of patients with HFE haemochromatosis.
abstract: HFE-related hereditary haemochromatosis (HH) is a common autosomal recessive disorder with clinical manifestations ranging from asymptomatic disease to possible life-threatening complications. Cirrhosis, hepatocellular carcinoma, diabetes mellitus or osteoporosis can develop in HH patients not treated or monitored optimally. The purpose of this study was to develop key-interventions (KI's) to measure and improve the quality of care delivered to patients diagnosed with HH.
  
  
  
  A RAND-Modified Delphi method was used to develop KI's. In the first round of a scoring form to prioritize the recommendations extracted from evidence-based guidelines was circulated between experts. The results of this survey were discussed in a consensus meeting, followed by a final appraisal of the selected recommendations. This resulted in a list of measurable KI's.
  
  
  
  Initially, 41 key recommendations on screening, diagnosis and treatment/management were extracted from three existing guidelines on HH (European Association for the Study of the Liver, American Association for the Study of Liver Diseases and Dutch guideline on HH). Finally, a core set of 24 recommendations resulted in 15 KI's.
  
  
  
  This manuscript presents the results of the process to develop KI's to measure and improve the quality of care for patients with HH.
authors.affiliation: Department of Hepatology and Metabolic Center, University Hospital Gasthuisberg, Herestraat 49, 3000, Leuven, Belgium. Annick.vanclooster@uzleuven.be.
authors.forename: Annick
authors.initials: A
authors.lastname: Vanclooster
authors.affiliation: Scientific Institute for Quality of Healthcare, Nijmegen Centre for Evidence Based Practice, Radboud University Medical Centre, Nijmegen, The Netherlands.
authors.forename: Hub
authors.initials: H
authors.lastname: Wollersheim
authors.affiliation: Department of Public Health and Primary Care, Health Services Research Group, KU Leuven, Leuven, Belgium.
authors.forename: Kris
authors.initials: K
authors.lastname: Vanhaecht
authors.affiliation: Department of Laboratory Medicine, Laboratory of Genetic Endocrine and Metabolic diseases, Radboud University Medical Centre, Nijmegen, The Netherlands.
authors.forename: Dorine
authors.initials: D
authors.lastname: Swinkels
authors.affiliation: Academic Center for General Practice, KU Leuven, Leuven, Belgium.
authors.forename: Bert
authors.initials: B
authors.lastname: Aertgeerts
authors.affiliation: Department of Hepatology and Metabolic Center, University Hospital Gasthuisberg, Herestraat 49, 3000, Leuven, Belgium.
authors.forename: David
authors.initials: D
authors.lastname: Cassiman
mesh_terms: D032921:Consensus; D003266:Continuity of Patient Care; D003697:Delphi Technique; D055317:Evidence-Based Practice; D030342:Genetic Diseases, Inborn; D017408:Guidelines as Topic; D006432:Hemochromatosis; D006801:Humans; D008107:Liver Diseases; D008297:Male; D058996:Quality Improvement; D011787:Quality of Health Care
keywords: Consensus; Hereditary haemochromatosis; Key-interventions; Recommendations