Percepciones de los pacientes con enfermedades reumáticas tratados con biológicos subcutáneos sobre su nivel de información. Encuesta RHEU-LIFE / Perceptions of patients with rheumatic diseases treated with subcutaneous biologicals on their level of information: RHEU-LIFE Survey

OBJETIVO: Conocer las fuentes de las que los pacientes españoles con enfermedades reumáticas tratados con fármacos biológicos subcutáneos obtienen información, cuáles consideran más relevantes y su satisfacción con la información recibida en el hospital. MÉTODOS: Reumatólogos de 50 hospitales entregaron una encuesta anónima, desarrollada ad hoc por 4 reumatólogos y 3 pacientes, a 20 pacientes consecutivos con artritis reumatoide, espondiloartritis axial o artritis psoriásica tratados con biológicos subcutáneos. La encuesta incluyó preguntas con respuestas cerradas sobre los aspectos mencionados previamente. RESULTADOS: Recibieron la encuesta 1.000 pacientes, 592 la devolvieron cumplimentada (tasa de respuesta: 59,2%). El reumatólogo fue mencionado como la fuente de información más importante (75%), seguido del médico de atención primaria, la enfermería y los recursos electrónicos. El 45,2% recibió información oral y por escrito sobre el biológico, el 46,1% solo oral, el 6% solo por escrito. Un 8,7% declaró no haber sido enseñado a inyectarse el biológico. El porcentaje de pacientes satisfechos con la información recibida fue elevado (87,2%), aunque la satisfacción fue menor en temas relacionados con la seguridad. Si la información provenía del reumatólogo, la satisfacción era mayor (89,6%) que cuando provenía de otras vías (59,6%; p < 0,001). La satisfacción también era mayor si se dio oral y por escrito (92,8%) frente a solo oral (86,1%; p = 0,013). Un 45,2% declaró haber buscado información en fuentes fuera del hospital. CONCLUSIONES: El reumatólogo es clave a la hora de transmitir información satisfactoria al paciente en tratamiento biológico. Debe además actuar de guía, ya que un elevado porcentaje busca información en fuentes distintas

OBJECTIVE: To investigate, in Spanish patients with rheumatic diseases treated with subcutaneous biological drugs, their sources of information, which sources they consider most relevant, and their satisfaction with the information received in the hospital. METHODS: Rheumatologists from 50 hospitals handed out an anonymous survey to 20 consecutive patients with rheumatoid arthritis, axial spondyloarthritis or psoriatic arthritis treated with subcutaneous biologicals. The survey was developed ad hoc by 4 rheumatologists and 3 patients, and included questions with closed-ended responses on sources of information and satisfaction. RESULTS: The survey was handed-out to 1,000 patients, 592 of whom completed it (response rate: 59.2%). The rheumatologist was mentioned as the most important source of information (75%), followed by the primary care physician, nurses, and electronic resources; 45.2% received oral and written information about the biological, 46.1% oral only, and 6.0% written only; 8.7% stated that they had not been taught to inject the biological. The percentage of patients satisfied with the information received was high (87.2%), although the satisfaction was lower in relation to safety. If the information came from the rheumatologist, the satisfaction was higher (89.6%) than when coming from other sources (59.6%; P<.001). Satisfaction was also higher if the information was provided orally and written (92.8%) than if provided only orally (86.1%; P=.013); 45.2% reported having sought information from sources outside the hospital. CONCLUSIONS: The rheumatologist is key in transmitting satisfactory information on biological treatment to patients. He or she must also act as a guide, since a high percentage of patients seeks information in other different sources

Perceptions of patients with rheumatic diseases treated with subcutaneous biologicals on their level of information: RHEU-LIFE Survey. / Percepciones de los pacientes con enfermedades reumáticas tratados con biológicos subcutáneos sobre su nivel de información. Encuesta RHEU-LIFE.

OBJECTIVE: To investigate, in Spanish patients with rheumatic diseases treated with subcutaneous biological drugs, their sources of information, which sources they consider most relevant, and their satisfaction with the information received in the hospital. METHODS: Rheumatologists from 50 hospitals handed out an anonymous survey to 20 consecutive patients with rheumatoid arthritis, axial spondyloarthritis or psoriatic arthritis treated with subcutaneous biologicals. The survey was developed ad hoc by 4 rheumatologists and 3 patients, and included questions with closed-ended responses on sources of information and satisfaction. RESULTS: The survey was handed-out to 1,000 patients, 592 of whom completed it (response rate: 59.2%). The rheumatologist was mentioned as the most important source of information (75%), followed by the primary care physician, nurses, and electronic resources; 45.2% received oral and written information about the biological, 46.1% oral only, and 6.0% written only; 8.7% stated that they had not been taught to inject the biological. The percentage of patients satisfied with the information received was high (87.2%), although the satisfaction was lower in relation to safety. If the information came from the rheumatologist, the satisfaction was higher (89.6%) than when coming from other sources (59.6%; P<.001). Satisfaction was also higher if the information was provided orally and written (92.8%) than if provided only orally (86.1%; P=.013); 45.2% reported having sought information from sources outside the hospital. CONCLUSIONS: The rheumatologist is key in transmitting satisfactory information on biological treatment to patients. He or she must also act as a guide, since a high percentage of patients seeks information in other different sources.