IQoL-32: A new ichthyosis-specific measure of quality of life - 14/06/13
, Charles Taïeb, MD b, Sébastien Barbarot, MD c, Aude Maza, MD a, Isabelle Galera, MD a, Emmanuelle Bourrat, MD d, Christine Chiaverini, MD e, Khaled Ezzedine, MD, PhD f, Anne Le Rhun, MD g, Juliette Mazereeuw-Hautier, MD, PhD aAbstract |
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.
Le texte complet de cet article est disponible en PDF.Key words : genodermatosis, ichthyosis, quality of life, questionnaire, score, tool
Abbreviations used : ANIPS, DLQI, QoL, SF-12
Plan
| Supported by the Association Athina Ichtyose Monaco. |
|
| Conflicts of interest: None declared. |
Vol 69 - N° 1
P. 82-87 - juillet 2013 Retour au numéro
Article précédent
- Two major pathways of penile carcinogenesis: HPV-induced penile cancers overexpress p16ink4a, HPV-negative cancers associated with dermatoses express p53, but lack p16ink4a overexpression
- Sebastian Mannweiler, Stephan Sygulla, Elke Winter, Sigrid Regauer
- The comparative effectiveness of suction-curettage and onabotulinumtoxin-A injections for the treatment of primary focal axillary hyperhidrosis: A randomized control trial
- Omer Ibrahim, Rohit Kakar, Diana Bolotin, Michael Nodzenski, Wareeporn Disphanurat, Natalie Pace, Lauren Becker, Dennis P. West, Emily Poon, Emir Veledar, Murad Alam
Bienvenue sur EM-consulte, la référence des professionnels de santé.
L’accès au texte intégral de cet article nécessite un abonnement.
Déjà abonné à cette revue ?