title: [Patients' intervention in a therapeutic education program dedicated to systemic lupus: definitions, setting and benefits].
abstract: OBJECTIVE
  Though recommended, participation of patients with specific expertise in therapeutic education programs (TEP) is rare. This work reports the experience of a national reference centre for rare systemic diseases.
  
  
  METHODS
  Involvement of "expert patients" (EP) has been planned from the development of a TEP dedicated to systemic lupus: patients' roles and required expertise have been defined and linked to the pedagogical tools. Such patients have been recruited during individual interviews and called to participate to specific pedagogical training. EP intervention have been evaluated by questionnaire to EP and health care providers.
  
  
  RESULTS
  Three EP's functions have been identified: sharing experiences, giving "tips and tricks" and promoting dialogue. EP's interventions has been organised into a hierarchy (from sharing to co-animation). Among 298 patients enrolled in the TEP, 25 (8.4%) have been identified as possible EP. Eight of them (32%) benefited from a specific training of 12 hours. Among these patients, two (25%) regularly participate to the education sessions. For EP as well as for health care providers, EP's intervention seems beneficial (visual scale scores of 7.5 and 9.5, respectively).
  
  
  CONCLUSIONS
  Though difficult to organise, EP's intervention in TEP dedicated to rare systemic diseases seems useful and would earn to be increase.
authors.affiliation: UPMC, service de médecine interne, centre national de référence du lupus et du syndrome des antiphospholipides, hôpital Pitié-Salpêtrière, Institut E3M, AP-HP, 47-83, boulevard de l'Hôpital, 75651 Paris cedex 13, France. Electronic address: baptiste.hervier@psl.aphp.fr.
authors.forename: B
authors.initials: B
authors.lastname: Hervier
authors.affiliation: EDU-Santé, 92170 Vanves, France.
authors.forename: Y
authors.initials: Y
authors.lastname: Magar
authors.affiliation: UPMC, service de médecine interne, centre national de référence du lupus et du syndrome des antiphospholipides, hôpital Pitié-Salpêtrière, Institut E3M, AP-HP, 47-83, boulevard de l'Hôpital, 75651 Paris cedex 13, France.
authors.forename: F
authors.initials: F
authors.lastname: Allab
authors.affiliation: UPMC, service de médecine interne, centre national de référence du lupus et du syndrome des antiphospholipides, hôpital Pitié-Salpêtrière, Institut E3M, AP-HP, 47-83, boulevard de l'Hôpital, 75651 Paris cedex 13, France.
authors.forename: K
authors.initials: K
authors.lastname: Richard
authors.affiliation: UPMC, service de médecine interne, centre national de référence du lupus et du syndrome des antiphospholipides, hôpital Pitié-Salpêtrière, Institut E3M, AP-HP, 47-83, boulevard de l'Hôpital, 75651 Paris cedex 13, France.
authors.forename: Y
authors.initials: Y
authors.lastname: Neves
authors.affiliation: UPMC, service de médecine interne, centre national de référence du lupus et du syndrome des antiphospholipides, hôpital Pitié-Salpêtrière, Institut E3M, AP-HP, 47-83, boulevard de l'Hôpital, 75651 Paris cedex 13, France.
authors.forename: S
authors.initials: S
authors.lastname: Danjou
authors.affiliation: UPMC, service de médecine interne, centre national de référence du lupus et du syndrome des antiphospholipides, hôpital Pitié-Salpêtrière, Institut E3M, AP-HP, 47-83, boulevard de l'Hôpital, 75651 Paris cedex 13, France.
authors.forename: Z
authors.initials: Z
authors.lastname: Amoura
authors.affiliation: EDU-Santé, 92170 Vanves, France.
authors.forename: S
authors.initials: S
authors.lastname: Ayçaguer
mesh_terms: D000328:Adult; D003479:Curriculum; D005104:Expert Testimony; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008180:Lupus Erythematosus, Systemic / Q000628:therapy*; D008875:Middle Aged; D010353:Patient Education as Topic / Q000379:methods / Q000458:organization & administration / Q000592:standards; D010358:Patient Participation / Q000379:methods*; D018579:Patient Selection; D011795:Surveys and Questionnaires
keywords: Expert patient; Lupus systémique; Patient intervenant; Systemic lupus erythematosus; Therapeutic education; Éducation thérapeutique