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

Sponsor
Universitaire Ziekenhuizen Leuven (Other)
Overall Status
Unknown status
CT.gov ID
NCT01991925
Collaborator
(none)
130
1

Study Details

Study Description

Brief Summary

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

Condition or Disease Intervention/Treatment Phase
  • Other: Interviews, questionaires, RAND-modified delphi method round

Study Design

Study Type:
Observational
Anticipated Enrollment :
130 participants
Time Perspective:
Prospective
Official Title:
Implications for Quality of Life and Quality of Care in Patients With Hereditary Haemochromatosis
Study Start Date :
Jan 1, 2014
Anticipated Primary Completion Date :
Mar 1, 2014

Arms and Interventions

Arm Intervention/Treatment
quality of life, quality of care

Other: Interviews, questionaires, RAND-modified delphi method round
phase 1: RAND-modified delphi method round with experts in hereditary haemochromatosis phase 2: patient interviews, questionaires and focusgroup interviews

Outcome Measures

Primary Outcome Measures

  1. evaluation of quality of life [after 3 months of treatment]

Eligibility Criteria

Criteria

Ages Eligible for Study:
18 Years and Older
Sexes Eligible for Study:
All
Accepts Healthy Volunteers:
No
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 secundary iron overload

  • phlebotomy treatment less than 3 months

  • language: no Dutch or English

Contacts and Locations

Locations

Site City State Country Postal Code
1 UZ Leuven Leuven Vlaams-brabant Belgium 3000

Sponsors and Collaborators

  • Universitaire Ziekenhuizen Leuven

Investigators

None specified.

Study Documents (Full-Text)

None provided.

More Information

Publications

None provided.
Responsible Party:
Annick Vanclooster, Nurse, Universitaire Ziekenhuizen Leuven
ClinicalTrials.gov Identifier:
NCT01991925
Other Study ID Numbers:
  • UZL-INT-01
First Posted:
Nov 25, 2013
Last Update Posted:
Nov 25, 2013
Last Verified:
Nov 1, 2013
Additional relevant MeSH terms:

Study Results

No Results Posted as of Nov 25, 2013