Haemochromatosis patients' research priorities: Towards an improved quality of life.

ABSTRACT:

Background

Chronic diseases are associated with a range of functional and psychosocial consequences that can adversely affect patients' quality of life (QoL). Haemochromatosis (HC) is a genetically heterogeneous disorder characterized by chronic iron overload that can ultimately lead to multiple organ dysfunction. Clinical diagnosis remains challenging due to the nonspecificity of symptoms and a lack of confirmatory genotyping in a substantial proportion of patients. Illness perception among HC patients has not been extensively investigated, lacking relevant information on how to improve their QoL.

Methods

We present the results of the first worldwide survey conducted in nearly 1500 HC respondents, in which we collected essential demographic information and identified the as

SUBMITTER: Romero-Cortadellas L 

PROVIDER: S-EPMC10632644 | biostudies-literature | 2023 Dec

REPOSITORIES: biostudies-literature