Quality of life and unmet needs in patients with fabry disease: a qualitative study.

ABSTRACT:

Background

Patients with Fabry disease (FD) consider their quality of life to be significantly affected. The majority of studies evaluate the quality of life using quantitative measures and standardised scales that offer relevant information about experience with the disease in multiple aspects. The main objective of the research was to examine in depth the quality of life and unmet needs of patients diagnosed with FD in relation to their disease and treatment. A qualitative and transversal study was carried out in two stages: (a) nine semi-structured qualitative interviews with patients and one representative of the patient association, conducted individually by phone; (b) a focus group was set up with three patients diagnosed with FD and one relative. A deductive, thematic analys

SUBMITTER: Morales M 

PROVIDER: S-EPMC11490088 | biostudies-literature | 2024 Oct

REPOSITORIES: biostudies-literature