HAL (France)
open access
For Me, Quality of Life Is When I Get Through the Day Without Thinking: I Won't Make It: A Participatory Qualitative Study of Health‐Related Quality of Life in Rare Liver Diseases
ABSTRACT Background Vascular liver diseases (VLDs) predominantly affect young adults and require lifelong monitoring. The health‐related quality of life (HRQoL) of patients with VLDs is deteriorated, with high levels of fatigue and depressive symptoms, but their lived experience and unmet needs rema
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