title: [Assessment of patient needs to design a patient education program in systemic lupus erythematosus].
abstract: OBJECTIVE
  The aim of this study was to collect information to design a patient education program (PEP) for patients with systemic lupus erythematosus (SLE), based as much as possible on their expectations.
  
  
  METHODS
  Three different approaches were used for addressing patients' needs: 1) A questionnaire on their expectations in terms of a PEP was sent to the members of SLE associations and offered to patients at the French reference center for SLE, 2) A patients' focus group was conducted, and 3) After the teaching sessions, satisfaction questionnaires were also evaluated.
  
  
  RESULTS
  The patients who answered the expectation questionnaire (n=422, women/men sex-ratio: 12.6) indicated a major interest in the PEP (70.4%). Their expectations were broad, and covered the topics of pregnancy (90% of the women under the age of 40), the outcome of the disease (80.8%), the respective roles of the different treatments (70.4%), and also the management of everyday symptoms: fatigue and pain (66.4%). The focus group (eight people) highlighted the need for improving how the diagnosis of the disease was delivered, and also revealed the loneliness and the guilty feeling experienced by some patients toward their relatives. Satisfaction questionnaires confirmed these expectations for the PEP, and even extended them to new topics: the mechanisms behind SLE, travel and leisure, and possible accommodations in the workplace.
  
  
  CONCLUSIONS
  The direct consultation of patients with SLE targeted by a specific PEP program allowed us to confirm and adapt the topics and the content of a program designed by medical staff.
authors.affiliation: UPMC, service de médecine interne 2, hôpital de la Pitié-Salpêtrière, Centre national de référence du lupus et du syndrome des antiphospholipides, 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: Service de médecine interne et maladies systémiques, CHU de Dijon, 21000 Dijon, France.
authors.forename: H
authors.initials: H
authors.lastname: Devilliers
authors.affiliation: UPMC, service de médecine interne 2, hôpital de la Pitié-Salpêtrière, Centre national de référence du lupus et du syndrome des antiphospholipides, AP-HP, 47-83, boulevard de l'Hôpital, 75651 Paris cedex 13, France.
authors.forename: F
authors.initials: F
authors.lastname: Amiour
authors.affiliation: EDU-Santé, 92170 Vanves, France.
authors.forename: S
authors.initials: S
authors.lastname: Ayçaguer
authors.affiliation: UPMC, service de médecine interne 2, hôpital de la Pitié-Salpêtrière, Centre national de référence du lupus et du syndrome des antiphospholipides, 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 2, hôpital de la Pitié-Salpêtrière, Centre national de référence du lupus et du syndrome des antiphospholipides, AP-HP, 47-83, boulevard de l'Hôpital, 75651 Paris cedex 13, France.
authors.forename: M-C
authors.initials: MC
authors.lastname: Ganem
authors.affiliation: UPMC, service de médecine interne 2, hôpital de la Pitié-Salpêtrière, Centre national de référence du lupus et du syndrome des antiphospholipides, AP-HP, 47-83, boulevard de l'Hôpital, 75651 Paris cedex 13, France.
authors.forename: Z
authors.initials: Z
authors.lastname: Amoura
authors.affiliation: HUEP, pharmacie, hôpital Saint-Antoine, AP-HP, 75012 Paris, France.
authors.forename: M
authors.initials: M
authors.lastname: Antignac
mesh_terms: D000328:Adult; D018450:Disease Progression; D005260:Female; D017144:Focus Groups; D006301:Health Services Needs and Demand; D006801:Humans; D008180:Lupus Erythematosus, Systemic / Q000523:psychology / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic / Q000379:methods* / Q000592:standards; D017060:Patient Satisfaction; D011247:Pregnancy; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Lupus systémique; Patient education program; Systemic lupus erythematosus; Éducation thérapeutique