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

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

WITHDRAWN

Study Classification

OBSERVATIONAL

Study Start Date

2016-04-30

Study Completion Date

2017-03-31

Brief Summary

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

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Detailed Description

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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

Conditions

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Hereditary Haemochromatosis

Study Design

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Observational Model Type

OTHER

Study Time Perspective

PROSPECTIVE

Study Groups

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quality of life, quality of care

hereditary haemochromatosis patients

Interviews, questionaires, RAND-modified delphi method round

Intervention Type OTHER

phase 1: RAND-modified delphi method round with experts in hereditary haemochromatosis phase 2: patient interviews, questionnaires and focus group interviews

Interventions

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Interviews, questionaires, RAND-modified delphi method round

phase 1: RAND-modified delphi method round with experts in hereditary haemochromatosis phase 2: patient interviews, questionnaires and focus group interviews

Intervention Type OTHER

Eligibility Criteria

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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