Factors influencing quality of life in patients with inherited ichthyosis: a qualitative study in adults using focus groups
J Mazereeuw‐Hautier, I Dreyfus… - British Journal of …, 2012 - academic.oup.com
J Mazereeuw‐Hautier, I Dreyfus, S Barbarot, L Serrentino, E Bourdon‐Lanoy, K Ezzedine…
British Journal of Dermatology, 2012•academic.oup.comBackground 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 …
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 …
Summary
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.
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