[Patients' intervention in a therapeutic education program dedicated to systemic lupus: definitions, setting and benefits]. / Intervention des patients dans l'animation d'un programme d'éducation thérapeutique dédié au lupus systémique : définitions, mise en place et bénéfices.
Rev Med Interne
; 36(10): 645-50, 2015 Oct.
Article
en Fr
| MEDLINE
| ID: mdl-26045337
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 ANDMETHODS:
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.Palabras clave
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Participación del Paciente
/
Educación del Paciente como Asunto
/
Selección de Paciente
/
Lupus Eritematoso Sistémico
Tipo de estudio:
Prognostic_studies
/
Qualitative_research
Aspecto:
Patient_preference
Límite:
Adult
/
Female
/
Humans
/
Middle aged
Idioma:
Fr
Revista:
Rev Med Interne
Año:
2015
Tipo del documento:
Article