Orphanet Journal of Rare Diseases | |
Importance of therapeutic patient education in ichthyosis: results of a prospective single reference center study | |
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 |
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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.
【 预 览 】
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【 参考文献 】
- [1]Oji V, Tadini G, Akiyama M, et al.: Revised nomenclature and classification of inherited ichthyoses: results of the First Ichthyosis Consensus Conference in Sorèze 2009. J Am Acad Dermatol 2010, 63:607-641.
- [2]Visser A, Deccache A, Bensing J: Patient education in Europe: united differences. Patient Educ Couns. 2001, 44:1-5.
- [3]Deccache A: Patient education in Belgium: evolution, policy and perspectives. Patient Educ Couns 2001, 44:43-48.
- [4]Skelton A: Evolution not revolution? The struggle for the recognition and development of patient education in the UK. Patient Educ Couns 2001, 44:23-27.
- [5][Hospital, Patients and territories] French National Law n° 2009–879: 21th July 2009 (in French: Loi n°2009-879 du 21 Juillet 2009 portant réforme de l’hôpital et relative aux patients. à la santé et aux territoires. Journal officiel de la République Française 2009, 12184. texte n°1
- [6]Kaplan SH, Greenfield S, Gandek B, Rogers W, Ware JE: Patient and visit characteristics related to physicians’ participatory decision-making styles. Results of the Medical Outcomes Study. Med Care 1995, 33:1176-1187.
- [7]Kaplan SH, Greenfield S, Gandek B, Rogers W, Ware JE: Characteristics of physicians with participatory decision-making styles. Ann Inter Med 1996, 124:497-504.
- [8]Mazereeuw-Hautier J, Dreyfus I, Barbarot S, et al.: Factors influencing quality of life in patients with inherited ichthyosis: a qualitative study in adults using focus groups. Br J Dermatol 2012, 166:646-648.
- [9]Gibson PG, Powell H, Coughlan J, et al.: Self-management education and regular practitioner review for adults with asthma. EH. Cochrane Database Syst Rev 2002, (3):CD001117.
- [10]Guevara JP, Wolf FM, Grum CM, Clark NM: Effect of educational interventions for self management of asthma in children and adolescents: systematic review and meta analysis. BMJ 2003, 326:1308-1309.
- [11]Miller LV, Goldstein J: More efficient care of diabetic patients in a country-hospital setting. New England J Med 1972, 286:1388-1391.
- [12]de Bes J, Legierse CM, Prinsen CA, de Korte J: Patient education in chronic skin diseases: a systematic review. Acta Derm Venereol 2011, 91:12-17.
- [13]Dufresne H, Hadj-Rabia S, Méni C, Sibaud V, Bodemer C, Taïeb C: Family burden in inherited ichthyosis: creation of a specific questionnaire. Orphanet J Rare Dis 2013, 8:28. BioMed Central Full Text