Publications by authors named "Leanne Slutter"
Orphanet J Rare Dis
November 2024
Article Synopsis
- Understanding quality of life (QoL) is crucial for diseases like Huntington's disease (HD), yet few studies focus on how gene expansion carriers (HDGECs) perceive their own QoL.
- This qualitative study interviewed 12 HDGECs (6 premanifest and 6 manifest) in the Netherlands to explore their definitions of QoL, revealing distinct themes for each group.
- Results showed that premanifest HDGECs focused on meaningful life concerns while manifest HDGECs dealt with adapting to reality, emphasizing the need for personalized care strategies that acknowledge the shifting perspectives of HDGECs.
