Exploring Perceived Quality of Life in Middle- to Old-Aged Patients with Inherited Ichthyosis: A Qualitative Study

This qualitative study explored the impact of inherited ichthyosis on the quality of life (QoL) of 15 middle- to old-aged patients, with a median age of 53, excluding those with ichthyosis vulgaris. The study found that ichthyosis negatively affects sexual health, reproductive decisions, and daily life due to physical symptoms like scaling, fatigue, and joint complaints. Psychosocial challenges include poor self-image, loneliness, and concerns about future skincare. Participants reported burdensome skincare routines and complex reproductive decision-making due to transmission risks. The study suggests improvements in healthcare through increased societal awareness, research into reproductive counseling, and psychological support.