Application and performance of disease activity indices proposed for patients with systemic sclerosis in an international cohort of patients with juvenile systemic sclerosis.

Objectives: Juvenile systemic sclerosis is a rare childhood disease. Three disease activity indices have been published for adult patients with systemic sclerosis: the European Scleroderma Study Group Index, a modified version of the European Scleroderma Study Group Index and the revised European Scleroderma Trials and Research index. The objective of this study was to determine the feasibility and performance of the three disease activity indices in a prospectively followed cohort of patients with juvenile systemic sclerosis. Methods: The analysis cohort was selected from the prospective international inception cohort enrolling juvenile systemic sclerosis patients. The correlation of the disease activity indices with the physicians' and the patients' global assessment of disease activity was determined. The disease activity indices were compared between patients with active and inactive disease. Sensitivity to change between 6- and 12-month follow-up was investigated by mixed models. Results: Eighty percent of the 70 patients had a diffuse cutaneous subtype. The revised European Scleroderma Trials and Research index was highly correlated with the physician-reported global disease activity/parents-reported global disease activity (r = 0.74/0.64), followed by the European Scleroderma Study Group activity index (r = 0.61/0.55) and the modified version of the European Scleroderma Study Group activity index (r = 0.51/0.43). The disease activity indices significantly differed between active and inactive patients. The disease activity indices showed sensitivity to change between 6- and 12-month follow-up among patients who improved or worsened according to the physician-reported global disease activity and the parents-reported global disease activity. Conclusion: Overall, no disease activity score is superior to the other, and all three scores have limitations in the application in juvenile systemic sclerosis patients. Furthermore, research on the concept of disease activity and suitable scores to measure disease activity in patients with juvenile systemic sclerosis is necessary in future.

Telerreumatología en tiempos de crisis durante la pandemia por COVID-19 / Tele-Rheumatology During the COVID-19 Pandemic

Introducción: Durante la pandemia por COVID-19 las necesidades de prevención de transmisión de la infección viral nos obligaron a potenciar las consultas virtuales. Objetivo: El objetivo de estudio es describir los resultados obtenidos con la anterior estrategia y definir el perfil de paciente más idóneo para aplicarla. Material y métodos: Durante el período comprendido entre el 16 de marzo y y el 10 de mayo del 2020 todas las consultas sucesivas de nuestro servicio fueron realizadas en formato de teleconsulta reumatológica (TCR). Se recogieron las características sociodemográficas, geofuncionales y clínicas de los pacientes; se evalúo mediante escala numérica verbal (0-10, donde 0 = muy insatisfecho hasta 10 = completamente satisfecho) el grado de satisfacción del paciente/médico con la TC. Resultados: La mayoría de los pacientes atendidos en las 469 TCR realizadas fueron mujeres, con una edad media de 60,83 años. Solo el 16% había realizado estudios universitarios. La distancia media recorrida para acudir a una consulta presencial era de 33km, con una inversión de tiempo total promedio de 2 h. La mayoría de los sujetos estaban diagnosticados de artrosis/reumatismos de partes blandas u osteoporosis; el 21% eran presentaban artritis reumatoide. La duración media de la TCR fue de 9,64 min. Encontramos una mayor satisfacción con la TCR por parte del paciente, cuando el nivel de estudios era más alto (OR = 4,33) y por parte del médico cuando el individuo manejaba mejor Internet (OR = 3,22). Conclusión: Es posible transferir actividad asistencial reumatológica hacia la TCR con un grado importante de satisfacción para el paciente y el médico.(AU)

Introduction: During the COVID-19 pandemic strategies to prevent transmission of the viral infection obliged our hospital to promote virtual consultations. Objetive: The objective of this study is to describe the results obtained with the previous strategy of transferring activity to teleconsultation during the period of maximum impact of the pandemic. Material and methods: Between 16/03 and 10/05/2020 all successive consultations in our unit were performed in virtual rheumatology teleconference (RTC) format. The socio-demographic, geo-functional and clinical characteristics of all patients were collected; a numeric verbal scale (NVS) (where 0=very dissatisfied to 10=fully satisfied) was applied to assess the degree of satisfaction of the doctor/patient with the RTC. Results: 469 TC were included. Most patients seen by RTC were women, mean age: 60,83 years. Only 16% had university education. The mean distance travelled for face-to face consultation is 33 Km with a mean total time of 2hours. Most individuals were diagnosed with osteoarthritis/soft tissue rheumatic diseases and/or osteoporosis; 21% had rheumatoid arthritis. The mean length of the TC was 9.64minutes. We find more patient satisfaction with the TC when their level of education is higher (OR=4.12); doctor satisfaction was higher when the individual was better able to manage the Internet (OR=3.01). Conclusion: It is possible to transfer rheumatological care activity to TC with a considerable degree of satisfaction for both the patient and the doctor.(AU)

Tele-Rheumatology during the COVID-19 pandemic.

INTRODUCTION: During the Covid-19 pandemic strategies to prevent transmission of the viral infection obliged our hospital to promote virtual consultations. OBJETIVE: The objective of this study is to describe the results obtained with the previous strategy of transferring activity to teleconsultation during the period of maximum impact of the pandemic. MATERIAL AND METHODS: Between 16/03 and 10/05/2020 all successive consultations in our unit were performed in virtual rheumatology teleconference (RTC) format. The socio-demographic, geo-functional and clinical characteristics of all patients were collected; a numeric verbal scale (NVS) (where 0 = very dissatisfied to 10 = fully satisfied) was applied to assess the degree of satisfaction of the doctor/patient with the RTC. RESULTS: 469 TC were included. Most patients seen by RTC were women, mean age: 60,83 years. Only 16% had university education. The mean distance travelled for face-to face consultation is 33 Km with a mean total time of 2 h. Most individuals were diagnosed with osteoarthritis/soft tissue rheumatic diseases and/or osteoporosis; 21% had rheumatoid arthritis. The mean length of the TC was 9.64 min. We find more patient satisfaction with the TC when their level of education is higher (OR = 4.12); doctor satisfaction was higher when the individual was better able to manage the Internet (OR = 3.01). CONCLUSION: It is possible to transfer rheumatological care activity to TC with a considerable degree of satisfaction for both the patient and the doctor.

Tele-Rheumatology During the COVID-19 Pandemic. / Telerreumatología en tiempos de crisis durante la pandemia por COVID-19.

INTRODUCTION: During the COVID-19 pandemic strategies to prevent transmission of the viral infection obliged our hospital to promote virtual consultations. OBJETIVE: The objective of this study is to describe the results obtained with the previous strategy of transferring activity to teleconsultation during the period of maximum impact of the pandemic. MATERIAL AND METHODS: Between 16/03 and 10/05/2020 all successive consultations in our unit were performed in virtual rheumatology teleconference (RTC) format. The socio-demographic, geo-functional and clinical characteristics of all patients were collected; a numeric verbal scale (NVS) (where 0=very dissatisfied to 10=fully satisfied) was applied to assess the degree of satisfaction of the doctor/patient with the RTC. RESULTS: 469 TC were included. Most patients seen by RTC were women, mean age: 60,83 years. Only 16% had university education. The mean distance travelled for face-to face consultation is 33 Km with a mean total time of 2hours. Most individuals were diagnosed with osteoarthritis/soft tissue rheumatic diseases and/or osteoporosis; 21% had rheumatoid arthritis. The mean length of the TC was 9.64minutes. We find more patient satisfaction with the TC when their level of education is higher (OR=4.12); doctor satisfaction was higher when the individual was better able to manage the Internet (OR=3.01). CONCLUSION: It is possible to transfer rheumatological care activity to TC with a considerable degree of satisfaction for both the patient and the doctor.

Telerreumatología en tiempos de crisis durante la pandemia por COVID-19 / Tele-rheumatology during the COVID-19 pandemic

INTRODUCCIÓN: Durante la pandemia por COVID-19 las necesidades de prevención de transmisión de la infección viral nos obligaron a potenciar las consultas virtuales. OBJETIVO: El objetivo de estudio es describir los resultados obtenidos con la anterior estrategia y definir el perfil de paciente más idóneo para aplicarla. MATERIAL Y MÉTODOS: Durante el período comprendido entre el 16 de marzo y y el 10 de mayo del 2020 todas las consultas sucesivas de nuestro servicio fueron realizadas en formato de teleconsulta reumatológica (TCR). Se recogieron las características sociodemográficas, geofuncionales y clínicas de los pacientes; se evalúo mediante escala numérica verbal (0-10, donde 0 = muy insatisfecho hasta 10 = completamente satisfecho) el grado de satisfacción del paciente/médico con la TC. RESULTADOS: La mayoría de los pacientes atendidos en las 469 TCR realizadas fueron mujeres, con una edad media de 60,83 años. Solo el 16% había realizado estudios universitarios. La distancia media recorrida para acudir a una consulta presencial era de 33km, con una inversión de tiempo total promedio de 2 h. La mayoría de los sujetos estaban diagnosticados de artrosis/reumatismos de partes blandas u osteoporosis; el 21% eran presentaban artritis reumatoide. La duración media de la TCR fue de 9,64 min. Encontramos una mayor satisfacción con la TCR por parte del paciente, cuando el nivel de estudios era más alto (OR = 4,33) y por parte del médico cuando el individuo manejaba mejor Internet (OR = 3,22). CONCLUSIÓN: Es posible transferir actividad asistencial reumatológica hacia la TCR con un grado importante de satisfacción para el paciente y el médico

INTRODUCTION: During the COVID-19 pandemic strategies to prevent transmission of the viral infection obliged our hospital to promote virtual consultations. OBJECTIVE: The objective of this study is to describe the results obtained with the previous strategy of transferring activity to teleconsultation during the period of maximum impact of the pandemic. MATERIAL AND METHODS: Between 16/03 and 10/05/2020 all successive consultations in our unit were performed in virtual rheumatology teleconference (RTC) format. The socio-demographic, geo-functional and clinical characteristics of all patients were collected; a numeric verbal scale (NVS) (where 0=very dissatisfied to 10=fully satisfied) was applied to assess the degree of satisfaction of the doctor/patient with the RTC. RESULTS: 469 TC were included. Most patients seen by RTC were women, mean age: 60,83 years. Only 16% had university education. The mean distance travelled for face-to face consultation is 33 Km with a mean total time of 2hours. Most individuals were diagnosed with osteoarthritis/soft tissue rheumatic diseases and/or osteoporosis; 21% had rheumatoid arthritis. The mean length of the TC was 9.64minutes. We find more patient satisfaction with the TC when their level of education is higher (OR=4.12); doctor satisfaction was higher when the individual was better able to manage the Internet (OR=3.01). CONCLUSION: It is possible to transfer rheumatological care activity to TC with a considerable degree of satisfaction for both the patient and the doctor