ABSTRACT
PURPOSE: 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. PATIENTS AND 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.
