Importance of therapeutic patient education in ichthyosis: results of a prospective single reference center study

Orphanet Journal of Rare Diseases

Christine Bodemer¹  Charles Taïeb²  Smail Hadj-Rabia¹  Helene Dufresne¹ 

[1] 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;Public Health and Quality of Life, Pierre Fabre, Paris, France

关键词: Collective program;    Ichthyosis;    Adults;    Children;    Therapeutic patient education;    Genodermatoses;   

Others  :  863635
DOI  :  10.1186/1750-1172-8-113

 received in 2013-04-29, accepted in 2013-07-05,  发布年份 2013

【 摘 要 】

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.

Objectives

To evaluate the impact of therapeutic educational programs in improving the knowledge of ichthyosis patients, and their relatives, about their disease.

Patients and 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.

Conclusion

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.

【 授权许可】

   
2013 Dufresne et al.; licensee BioMed Central Ltd.

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