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BMC Health Services Research
Published in: BMC Health Services Research 1/2016

Open Access 01-12-2016 | Research article

Key-interventions derived from three evidence based guidelines for management and follow-up of patients with HFE haemochromatosis

Authors: Annick Vanclooster, Hub Wollersheim, Kris Vanhaecht, Dorine Swinkels, Bert Aertgeerts, David Cassiman, on behalf of the Haemochromatosis working group

Published in: BMC Health Services Research | Issue 1/2016

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Abstract

Background

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.

Methods

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.

Results

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.

Conclusions

This manuscript presents the results of the process to develop KI’s to measure and improve the quality of care for patients with HH.
Appendix
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Metadata
Title
Key-interventions derived from three evidence based guidelines for management and follow-up of patients with HFE haemochromatosis
Authors
Annick Vanclooster
Hub Wollersheim
Kris Vanhaecht
Dorine Swinkels
Bert Aertgeerts
David Cassiman
on behalf of the Haemochromatosis working group
Publication date
01-12-2016
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2016
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-016-1835-2

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