Original article
IQoL-32: A new ichthyosis-specific measure of quality of life

https://doi.org/10.1016/j.jaad.2013.01.022Get rights and content

Background

Inherited ichthyoses are associated with impaired quality of life (QoL).

Objectives

The aim of this study was to create and validate a QoL questionnaire specifically dedicated to patients with ichthyosis.

Methods

A prequestionnaire was drawn after selecting items from a verbatim transcript. It was then subjected to a cognitive debriefing. During the validation step, this questionnaire was sent to patients with the Dermatology Life Quality Index, Short Form-12 health-related questionnaire, and severity scores (global severity: mild/moderate/severe/very severe; clinical severity evaluated by 6 visual analog scales). A shortened version of the questionnaire was designed. The validity of the tool was confirmed: for its structure and 1-dimensional nature (Cronbach α), convergent (Spearman correlation) and discriminating (Tukey test) validity; α risk was fixed at 5%.

Results

The initial questionnaire included 60 items. During the validation phase, 59 subjects were tested. The shortened version included 32 items (IQoL-32) and 7 dimensions (Cronbach α: 0.94). The higher the score, the more impacted the QoL. IQoL-32 was positively correlated to Dermatology Life Quality Index (P < .0001) and negatively to Short Form-12 health-related questionnaire (P < .0001). IQoL-32 was highly correlated to clinical severity: overall analysis (Spearman ranking: 0.72; P < .0001) or analysis per dimension (highest correlations: discomfort, pain, interpersonal relations). IQoL-32 demonstrated a higher correlation with visual analog scale compared with Dermatology Life Quality Index and Short Form-12 health-related questionnaire. It also showed a good discriminating power (P < .0001) according to overall severity levels.

Limitations

Only patients residing in France were included.

Conclusion

IQoL-32 is a specific and validated questionnaire for inherited ichthyosis. It will be very useful for patient care and research.

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

References (9)

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Supported by the Association Athina Ichtyose Monaco.

Conflicts of interest: None declared.

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