Factors influencing quality of life in patients with inherited ichthyosis: a qualitative study in adults using focus groups

• DOI: 10.1111/j.1365-2133.2011.10701.x
• Publication Date: 2011-10-21T12:02:38Z
• Authors: J. Mazereeuw-Hautier; I. Dreyfus; S. Barbarot; L. Serrentino; E. Bourdon-Lanoy; K. Ezzedine; A. Maza; I. Aujoulat; A. Le Rhun
• Keywords: Congenital ichthyosis

There is limited information regarding quality of life in patients with inherited ichthyosis.To identify factors influencing ichthyosis.The study used focus groups and involved adult suffering from ichthyosis three French hospital centres. Group discussions were conducted by two facilitators continued until data saturation was reached. The verbatim transcripts analysed independently investigators. Categories considered as key the modulation negotiated agreement obtained.Data reached after fifth group. A total 25 affected various forms attended these groups. identified related to physical health, daily life, relations others or oneself. However, together difficulties ichthyosis, also underlined some positive aspects disease described specific measures improve their life.This first investigating different that could impact ichthyosis. This provides an essential framework which physicians can develop strategies patient care a questionnaire.