Haemochromatosis patients' research priorities: Towards an improved quality of life
Author
Romero-Cortadellas, Lídia
Venturi, Veronica
Martín-Sánchez, Juan Carlos
Toska, Ketil
Prince, Dianne
Butzeck, Barbara
Porto, Graça
Thorm Milman, Nils
HI/EFAPH Survey Committee
Sánchez, Mayka
Publication date
2023ISSN
1369-6513
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 aspects that concern HC patients the most. Results: Out of all the participants, 45.3% (n = 676) voiced their concern about physical and psychological consequences such as HC-related arthropathies, which can ultimately affect their social functioning. A similar proportion of patients (n = 635, 42.5%) also consider that better-informed doctors are key for improved HC disease management. Taking a patient-centred approach, we expose differences in patients' disease perspective by social and economic influences. Conclusions: We identify potential targets to improve patients' health-related QoL and reflect on strategic measures to foster gender equity in access to health resources. Finally, we make a call for a highly coordinated effort across a range of public policy areas to empower participants in the HC research process and design. Patient or Public Contribution: Nearly 1500 patients with hereditary HC responded to an anonymized online survey in which research and clinical priorities were addressed regarding this chronic and rare disease.
Document Type
Article
Document version
Published version
Language
English
Subject (CDU)
61 - Medical sciences
Keywords
Malaltia crònica
Hemocromatosi
Sobrecàrrega de ferro
Necessitats dels pacients
Qualitat de vida (QdV)
Enquesta
Enfermedad crónica
Hemocromatosis
Sobrecarga de hierro
Necesidades de los pacientes
Calidad de vida (CdV)
Encuesta
Chronic disease
Haemochromatosis
Iron overload
Patients' needs
Quality of life (QoL)
Survey
Pages
9
Publisher
Wiley
Is part of
Health Expectations
Citation
Romero-Cortadellas, Lídia; Venturi, Veronica; Martín-Sánchez, Juan Carlos [et al.]. Haemochromatosis patients' research priorities: Towards an improved quality of life. Health Expectations, 2023, p. 1-9. Disponible en: <https://onlinelibrary.wiley.com/doi/10.1111/hex.13830>. Fecha de acceso: 7 nov. 2023. DOI: 10.1111/hex.13830.
This item appears in the following Collection(s)
- Ciències de la Salut [738]
Rights
© 2023 The Authors.Health Expectationspublished by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium,provided the original work is properly cited.
Except where otherwise noted, this item's license is described as https://creativecommons.org/licenses/by/4.0/