V. Oji, G. Tadini, and M. Akiyama, Revised nomenclature and classification of inherited ichthyoses: Results of the First Ichthyosis Consensus Conference in Sor??ze 2009, Journal of the American Academy of Dermatology, vol.63, issue.4, pp.607-641, 2010.
DOI : 10.1016/j.jaad.2009.11.020

A. Visser, A. Deccache, and J. Bensing, Patient education in Europe: united differences, Patient Education and Counseling, vol.44, issue.1, pp.1-5, 2001.
DOI : 10.1016/S0738-3991(01)00111-2

A. Deccache, Patient education in Belgium: evolution, policy and perspectives, Patient Education and Counseling, vol.44, issue.1, pp.43-48, 2001.
DOI : 10.1016/S0738-3991(01)00101-X

A. Skelton, Evolution not revolution? The struggle for the recognition and development of patient education in the UK, Patient Education and Counseling, vol.44, issue.1, pp.23-27, 2001.
DOI : 10.1016/S0738-3991(01)00098-2

S. Kaplan, S. Greenfield, B. Gandek, R. W. Ware, and J. , Patient and Visit Characteristics Related to Physicians??? Participatory Decision-Making Style, Medical Care, vol.33, issue.12, pp.1176-1187, 1995.
DOI : 10.1097/00005650-199512000-00002

S. Kaplan, S. Greenfield, B. Gandek, R. W. Ware, and J. , Characteristics of Physicians with Participatory Decision-Making Styles, Annals of Internal Medicine, vol.124, issue.5, pp.497-504, 1996.
DOI : 10.7326/0003-4819-124-5-199603010-00007

J. Mazereeuw-hautier, I. Dreyfus, and S. Barbarot, Factors influencing quality of life in patients with inherited ichthyosis: a qualitative study in adults using focus groups, British Journal of Dermatology, vol.66, issue.3, pp.646-648, 2012.
DOI : 10.1111/j.1365-2133.2011.10701.x

P. Gibson, H. Powell, and J. Coughlan, Self-management education and regular practitioner review for adults with asthma, EH. Cochrane Database Syst Rev, vol.151, issue.1, p.1117, 2002.
DOI : 10.1002/14651858.CD001117

J. Guevara, F. Wolf, C. Grum, and N. Clark, Effects of educational interventions for self management of asthma in children and adolescents: systematic review and meta-analysis, BMJ, vol.326, issue.7402, pp.1308-1309, 2003.
DOI : 10.1136/bmj.326.7402.1308

L. Miller and J. Goldstein, More Efficient Care of Diabetic Patients in a County-Hospital Setting, New England Journal of Medicine, vol.286, issue.26, pp.1388-1391, 1972.
DOI : 10.1056/NEJM197206292862605

J. De-bes, C. Legierse, C. Prinsen, and J. De-korte, Patient Education in Chronic Skin Diseases: A Systematic Review, Acta Dermato Venereologica, vol.91, issue.1, pp.12-17, 2011.
DOI : 10.2340/00015555-1022

H. Dufresne, S. Hadj-rabia, C. Méni, V. Sibaud, C. Bodemer et al., Family burden in inherited ichthyosis: creation of a specific questionnaire, Orphanet Journal of Rare Diseases, vol.8, issue.1, p.28, 2013.
DOI : 10.1186/1750-1172-8-28

URL : https://hal.archives-ouvertes.fr/inserm-00800769