Health-related quality of life outcome measures in individuals with hereditary hemorrhagic telangiectasia: a scoping review
Background Studies evaluating health-related quality of life (HRQOL) in patients with
hereditary hemorrhagic telangiectasia (HHT) have expanded rapidly in the past decade …
hereditary hemorrhagic telangiectasia (HHT) have expanded rapidly in the past decade …
Development and validation of a quality of life measurement scale specific to hereditary hemorrhagic telangiectasia: the QoL-HHT
TTT Le, G Martinent, S Dupuis-Girod, A Parrot… - Orphanet Journal of …, 2022 - Springer
Background Hereditary hemorrhagic telangiectasia (HHT) disease is a rare genetic disorder
with symptoms and complications that can significantly affect patients' daily lives. To date, no …
with symptoms and complications that can significantly affect patients' daily lives. To date, no …
Understanding rare disease experiences through the concept of morally problematic situations
A Quintal, É Hotte, C Hébert, I Carreau, AD Grenier… - HEC Forum, 2023 - Springer
Rare diseases, defined as having a prevalence inferior to 1/2000, are poorly understood
scientifically and medically. Appropriate diagnoses and treatments are scarce, adding to the …
scientifically and medically. Appropriate diagnoses and treatments are scarce, adding to the …
Exploring effects of atmospheric conditions in hereditary hemorrhagic telangiectasia
HM Yusuf, A Rasheed, S Hetts, H Kim… - … Forum of Allergy & …, 2023 - Wiley Online Library
Background Hereditary hemorrhagic telangiectasia (HHT) is a rare autosomal dominant
disorder characterized by recurrent epistaxis, telangiectasias, and visceral arteriovenous …
disorder characterized by recurrent epistaxis, telangiectasias, and visceral arteriovenous …
[HTML][HTML] An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach
A Quintal, I Carreau, AD Grenier, C Hébert… - Journal of Participatory …, 2023 - jopm.jmir.org
Background: Owing to their low prevalence, rare diseases are poorly addressed in the
scientific literature and clinical practice guidelines. Thus, health care workers are …
scientific literature and clinical practice guidelines. Thus, health care workers are …
[PDF][PDF] Création et validation d'une échelle de mesure de la qualité de vie spécifique à une pathologie génétique rare: l'étude ELECT-RO dans la maladie de Rendu …
S FOURDRINOY, AE FARGETON, G MARTINENT… - researchgate.net
Conclusion Cette échelle validée permettra une identification et une quantification des
aspects de la qualité de vie impactés chez les patients présentant une maladie de RO afin …
aspects de la qualité de vie impactés chez les patients présentant une maladie de RO afin …