Original articleIQoL-32: A new ichthyosis-specific measure of quality of life
Section snippets
Methods
Each step of the construction of the preliminary questionnaire and the elaboration of the final shortened version were statistically validated, in accordance to standardized methodology used for QoL questionnaire development.6
Patients’ characteristics
The initial questionnaire, which included 60 items, was sent to 130 patients (125 from hospital departments and 5 from ANIPS). A total of 62 were returned, including 59 assessable questionnaires for which responder characteristics are shown in Table I. The study population comprised a majority of female patients. All ages and grades of ichthyosis severity were represented in the study population, the most common being moderate and severe ichthyosis.
Shortened version of the questionnaire
The shortened version contained 32 items named
Discussion
To our knowledge, this is the first ichthyosis-specific QoL assessment tool. It is available in 2 languages (French and English). If necessary it could be translated in other languages after cultural and linguistic validations.
IQoL-32 is a short and easy-to-use questionnaire containing 32 questions and organized in 7 domains. The questions are specifically dedicated to ichthyosis and explore all disease particularities such as skin pain/discomfort, ear- and eye-related problems, heat
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Supported by the Association Athina Ichtyose Monaco.
Conflicts of interest: None declared.