title: Importance of therapeutic patient education in ichthyosis: results of a prospective single reference center study.
abstract: BACKGROUND
  Ichthyoses are a heterogeneous group of rare genodermatoses. Patients and their families face difficulties related to daily care and management that may be aggravated by social isolation.
  
  
  OBJECTIVE
  To evaluate the impact of therapeutic educational programs in improving the knowledge of ichthyosis patients, and their relatives, about their disease.
  
  
  METHODS
  We organized a two sessions-program of "know-how" dedicated to the overall management of ichthyoses. These sessions were conducted based on a tool specifically designed for the study, which addressed our various areas of expertise through a collective game. The participants (patients and their parents and siblings) were divided into groups, and the questions were tailored according to the participants' age. The program was conceived as a knowledge reinforcement program that took place during a weekend of education and rest, organized away from healthcare structures. Our aim was to facilitate the program in a neutral place to encourage respite care and to ensure the availability of a multidisciplinary healthcare team.
  
  
  RESULTS
  After the reinforcement session, children aged from 6 to 12 years and their families acquired the targeted know-how and social skills.
  
  
  CONCLUSIONS
  Benefits of TPE in the management of ichthyoses are the following: (1) the trust between patients their families and the caregivers was strengthened; (2) the context of the program encouraged self-expression, answered questions and provided mutual aid; and (3) the more self-sufficient families could better manage emergencies.
authors.affiliation: Department of Dermatology, Reference center for genodermatoses and rare skin diseases (MAGEC), INSERM U781, Université Paris Descartes-Sorbonne Paris Cité, Institut Imagine, Hôpital Universitaire Necker-Enfants Malades, Paris, France. helene.dufresne@nck.aphp.fr
authors.forename: Helene
authors.initials: H
authors.lastname: Dufresne
authors.forename: Smail
authors.initials: S
authors.lastname: Hadj-Rabia
authors.forename: Charles
authors.initials: C
authors.lastname: Taïeb
authors.forename: Christine
authors.initials: C
authors.lastname: Bodemer
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D005260:Female; D006801:Humans; D007057:Ichthyosis / Q000503:physiopathology* / Q000523:psychology* / Q000628:therapy; D008297:Male; D010290:Parents; D010353:Patient Education as Topic / Q000379:methods* / Q000592:standards; D011446:Prospective Studies; D035781:Siblings
references.citation: Patient Educ Couns. 2001 Jul;44(1):1-5
references.pmid: 11390150
references.citation: Med Care. 1995 Dec;33(12):1176-87
references.pmid: 7500658
references.citation: J Am Acad Dermatol. 2010 Oct;63(4):607-41
references.pmid: 20643494
references.citation: BMJ. 2003 Jun 14;326(7402):1308-9
references.pmid: 12805167
references.citation: Cochrane Database Syst Rev. 2003;(1):CD001117
references.pmid: 12535399
references.citation: Patient Educ Couns. 2001 Jul;44(1):23-7
references.pmid: 11390153
references.citation: Orphanet J Rare Dis. 2013 Feb 15;8:28
references.pmid: 23414570
references.citation: Patient Educ Couns. 2001 Jul;44(1):43-8
references.pmid: 11390156
references.citation: N Engl J Med. 1972 Jun 29;286(26):1388-91
references.pmid: 5030023
references.citation: Acta Derm Venereol. 2011 Jan;91(1):12-7
references.pmid: 21264451
references.citation: Br J Dermatol. 2012 Mar;166(3):646-8
references.pmid: 22014001
references.citation: Ann Intern Med. 1996 Mar 1;124(5):497-504
references.pmid: 8602709