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

N/AWithdrawnNCT01991925

Universitaire Ziekenhuizen KU Leuven

Overview

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

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 Type

OBSERVATIONAL

Conditions

Hereditary Haemochromatosis

Interventions

Interviews, questionaires, RAND-modified delphi method roundOTHER

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

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

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

Locations (1)

UZ Leuven

Leuven, Vlaams-brabant, Belgium

Outcomes

Primary Outcomes

evaluation of quality of life

quality of life

Time frame: after 3 months of treatment

Data from ClinicalTrials.gov

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