Funding sources This study was funded by the Association Ichtyose Athina Monaco, Monaco.
Factors influencing quality of life in patients with inherited ichthyosis: a qualitative study in adults using focus groups
Article first published online: 22 FEB 2012
© 2011 The Authors. BJD © 2011 British Association of Dermatologists
British Journal of Dermatology
Volume 166, Issue 3, pages 646–648, March 2012
How to Cite
Mazereeuw-Hautier, J., Dreyfus, I., Barbarot, S., Serrentino, L., Bourdon-Lanoy, E., Ezzedine, K., Maza, A., Aujoulat, I. and Le Rhun, A. (2012), Factors influencing quality of life in patients with inherited ichthyosis: a qualitative study in adults using focus groups. British Journal of Dermatology, 166: 646–648. doi: 10.1111/j.1365-2133.2011.10701.x
Conflicts of interest The authors have no conflict of interest.
- Issue published online: 22 FEB 2012
- Article first published online: 22 FEB 2012
- Accepted manuscript online: 20 OCT 2011 11:12AM EST
- Accepted for publication 12 October 2011
Background There is limited information regarding quality of life in patients with inherited ichthyosis.
Objectives To identify factors influencing quality of life in patients with inherited ichthyosis.
Methods The study used focus groups and involved adult patients suffering from inherited ichthyosis from three French hospital centres. Group discussions were conducted by two facilitators and were continued until data saturation was reached. The verbatim transcripts were analysed independently by two investigators. Categories considered as key factors in the modulation of quality of life were negotiated until agreement was obtained.
Results Data saturation was reached after the fifth group. A total of 25 patients affected by various forms of ichthyosis attended these focus groups. The identified factors influencing quality of life were related to physical health, daily life, relations with others or oneself. However, together with difficulties related to ichthyosis, patients also underlined some positive aspects of the disease and described specific measures used to improve their quality of life.
Conclusions This is the first study investigating the different factors that could impact quality of life in patients with ichthyosis. This provides an essential framework from which physicians can develop strategies to improve patient care and quality of life and to develop a specific quality of life questionnaire.