Implications for Quality of Life and Quality of Care in Patients With Hereditary Haemochromatosis

Withdrawn

• Conditions: Hereditary Haemochromatosis
• Interventions: Other: Interviews, questionaires, RAND-modified delphi method round

• Registration Number: NCT01991925
• Lead Sponsor: Universitaire Ziekenhuizen KU Leuven

Brief Summary

Patients with hereditary haemochromatosis will be interviewed/questioned about their Quality of life and the delivered quality of care in the hospital.

Detailed Description

Patients with hereditary haemochromatosis will be interviewed/questioned about their Quality of life and the delivered quality of care in the hospital during follow-up

Study Timeline

• Study First Submitted: 2013-11-18
• Study First Submitted QC: 2013-11-18
• Study First Posted: 2013-11-25
• Study Start: 2016-04
• Primary Completion: 2017-03
• Study Completion: 2017-03
• Status Verified: 2023-03
• Last Update Submitted: 2023-03-28
• Last Update Posted: 2023-03-31

Recruitment & Eligibility

• Status: WITHDRAWN
• Sex: All
• Target Recruitment: Not specified

Inclusion Criteria

• phase 1: experts in the field of haemochromatosis (hepatologists, hematologists, endocrinologists, general practitioner, nurses, ...)
• phase 2: patients with hereditary haemochromatosis, treatment with phlebotomy since 3 months, Dutch/English speaking

Exclusion Criteria

• patients with secondary iron overload
• phlebotomy treatment less than 3 months
• language: no Dutch or English

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
quality of life, quality of care	Interviews, questionaires, RAND-modified delphi method round	hereditary haemochromatosis patients

Primary Outcome Measures

Name	Time	Method
evaluation of quality of life	after 3 months of treatment	quality of life

Trial Locations

Locations (1)

UZ Leuven; 🇧🇪 Leuven, Vlaams-brabant, Belgium