Evaluación de las necesidades educacionales de los pacientes con artritis reumatoide mediante el cuestionario SpENAT / Evaluation of the educational needs in Argentine patients with rheumatoid arthritis using the SpENAT questionnaire

INTRODUCCIÓN: El Educational Needs Assessment Tool-versión española (SpENAT) es un cuestionario autorreportado que evalúa las necesidades educacionales (NEd) con el fin de dar información adaptada y centrada en el paciente con artritis reumatoide (AR). Comprende 39 preguntas agrupadas en 7 dominios: Manejo del dolor, Movimiento, Sentimientos, Proceso de artritis, Tratamientos, Medidas de autoayuda y Sistemas de apoyo. OBJETIVOS: Evaluar las NEd en pacientes con AR mediante el SpENAT y determinar cuáles son las principales fuentes de información a las que consultan. MATERIAL Y MÉTODOS: Estudio multicéntrico, observacional, analítico, de corte transversal. Se incluyeron pacientes consecutivos≥18 años con diagnóstico de AR (ACR 87 y/o ACR-EULAR 2010). Se consignaron datos demográficos, nivel educativo, características de la enfermedad y medidas clinimétricas. Todos los pacientes completaron el SpENAT y fueron interrogados acerca de las fuentes a las que acuden para obtener información de su enfermedad. ANÁLISIS ESTADÍSTICO: Se describieron las características poblacionales. Se determinaron las NEd como porcentajes del puntaje máximo posible de cada dominio. Se compararon las necesidades por dominio según sexo, años de educación, tiempo de evolución, uso de biológico y capacidad funcional mediante test de Anova y las comparaciones de a pares con prueba t de Student y corrección de Bonferroni. Se determinó correlación entre los dominios con test de Spearman. Se comparó la edad según la fuente de información con la prueba t de Student. RESULTADOS: Se incluyeron 496 pacientes de 20 centros de todo el país. Se observaron mayores NEd en los dominios Movimiento, Sentimientos y Proceso de artritis. Los pacientes de mayor nivel educacional (>7 años) refirieron mayores NEd en los dominios Proceso de artritis y Medidas de autoayuda. Un mayor deterioro funcional (HAQ≥0,87) se asoció con unas mayores NEd en todos los dominios. Los pacientes con alta actividad mostraron mayores NEd que los pacientes en remisión en los dominios Manejo del dolor, Movimiento, Sentimientos, Tratamientos y Sistemas de apoyo, y que los pacientes con baja actividad en los dominios Medidas de autoayuda y Sistemas de apoyo. Todos los dominios del SpENAT mostraron correlaciones positivas entre sí (p < 0,0001), siendo las más importantes Manejo del dolor/Movimiento y Tratamientos/Proceso de artritis (r≥0,7). La fuente de información más consultada fue el reumatólogo (93,95%); quienes recurrían a Internet tenían una menor edad en promedio (p = 0,0004). CONCLUSIÓN: Los pacientes con AR manifestaron un gran interés por conocer más sobre su enfermedad. Un elevado deterioro funcional se asocia con mayores NEd. Los pacientes con alta actividad de la enfermedad presentan mayores NEd en casi todos los dominios. El médico reumatólogo es la principal fuente de información del paciente con AR

BACKGROUND: The SpENAT, a Spanish version of the Educational Needs Assessment Tool, is a self-completed questionnaire that assesses educational needs (ENs) with the purpose of providing tailored and patient-centered information. It consists of 39 questions grouped into the 7 following domains: Pain management, Movement, Feelings, Arthritic process, Treatments, Self-help measures and Support system. OBJECTIVES: The objective of the study was to describe the ENs of rheumatoid arthritis (RA) patients using the SpENAT and to determine the main sources of information consulted by these patients. MATERIAL AND METHODS: Multicenter, observational, cross-sectional study. We included consecutive patients≥18 years with diagnosis of RA (ACR 87/ACR-EULAR 2010). Sociodemographic data, disease characteristics and clinimetric properties were recorded. All patients completed the SpENAT and were asked about the sources employed to obtain information about their disease. STATISTICAL ANALYSIS: Population characteristics were described. ENs were determined as percentages of the highest possible score for each domain. Needs for each domain according to sex, years of education, disease duration, use of biologicals and functional capacity were analyzed by means of ANOVA, and bivariate comparisons were made with Student's t-test and the Bonferroni correction. Correlation between domains was determined with the Spearman correlation coefficient. We compared patients' age by source of information with Student's t-test. RESULTS: We included 496 patients from 20 centers across the country. More ENs were observed in the domains of Movement, Feelings and the Arthritic process. Patients with higher educational level (>7 years) reported more ENs in the Arthritic process and Self-help measure domains. A higher functional impairment (HAQ-A≥0.87) was associated with more ENs in every domain. Patients with high activity showed more ENs than those in remission in the domains of Pain management, Movement, Feelings, Treatments and Support system, as well as those with low activity in Self-help measures and Support system domains. All SpENAT domains showed positive correlations among each other (P<.0001), the most important being Pain management/Movement and Treatments/Arthritic process (r≥0.7). The source of information most frequently consulted was the rheumatologist (93.95%); those who made use of Internet were on average younger (P=.0004). CONCLUSION: RA patients were very interested about knowing more about their disease. High functional impairment was associated with more ENs. Patients with high disease activity had higher EN levels in almost every domain. The rheumatologist was the main source of information for the patient with RA

Asociación entre Artritis Reumatoidea y otras enfermedades autoinmunes / Association between Rheumatoid Arthritis and other autoimmune diseases

Objetivos: Determinar la frecuencia de enfermedades autoinmunes (EAI) en pacientes con Artritis Reumatoidea (AR) y comparar la frecuencia de EAI entre pacientes con AR y sin AR ni otra EAI reumatológica. Material y Métodos: Estudio multicéntrico, observacional, analítico, retrospectivo. Se incluyeron pacientes consecutivos con AR (ACR/EULAR 2010) y como grupo control pacientes con diagnóstico inicial de Osteoartritis primaria (OA). Resultados: Se incluyeron 1549 pacientes: 831 con AR (84% mujeres, edad media 55.2 años [DE 13.6]) y 718 con OA (82% mujeres, edad media 67 años [DE 11.1]). La frecuencia de EAI en el grupo AR fue del 22% (n=183). Estos presentaron mayor frecuencia de EAI reumatológicas (9.4 vs 3.3%, p< 0.001), y menor frecuencia de EAI no reumatológicas que aquellos con OA (15.3 vs 20.5, p=0.007). La EAI reumatológica más prevalente fue el Síndrome de Sjögren, el cual fue más frecuente en el grupo AR (87.2 vs 29.2%, p< 0,001). La frecuencia de EAI reumatológicas en los pacientes con AR fue mayor en la forma erosiva (11 vs 6.8%, p=0.048). Conclusión: La frecuencia de EAI en los pacientes con AR fue del 22%, en quienes predominaron las de etiología reumatológica mientras que, las no reumatológicas predominaron en pacientes con OA.

Objectives: To determine the frequency of autoimmune diseases (AID) in Rheumatoid Arthritis (RA) patients and to compare this frequency between patients with and without RA or other rheumatologic AID. Methods: Multicenter, observational, analytical, retrospective study. Consecutive patients with diagnosis of RA (ACR/EULAR 2010) were included. Patients with initial diagnosis of primary ostearthritis (OA) were used as control group. Results: A total of 1549 patients were included: 831 RA (84% women, mean age 55.2 [±13.6]) and 718 OA (82% women, mean age 67 [± 11.1]). The frequency of AID in the RA group was 22% (n=183). RA patients showed higher frequency of rheumatologic AID (9.4 vs 3.3%, p< 0.001), and lower frequency of non-rheumatologic AID than OA patients (15.3 vs 20.5%, p= 0.007). The most prevalent rheumatic AID was Sjögren's Syndrome, which was more frequent in the AR group (87.2 vs 29.2%, p<0.001). The frequency of rheumatologic AID in RA patients was higher in those with erosive RA (11 vs 6.8%, p=0.048). Conclusion: The frequency of AID in RA patients was 22%. Rheumatologic AID were more frequent in RA patients, whereas non-rheumatologic AID prevailed in OA patients.

A useful tool to assess quality of LIFE in rheumatoid arthritis patients that does not require a license: QOL-RA II.

To validate the Quality of Life-Rheumatoid Arthritis Scale II (QOL-RA II) in an Argentinean cohort of patients with rheumatoid arthritis (RA). Patients ≥ 18 years old, with a diagnosis of RA according to ACR-EULAR 2010 criteria, were included in a cross-sectional study. Sociodemographic data, comorbidities, RA characteristics, disease activity, and current treatment were registered. Questionnaires were administered, including EQ-5D-3 L, QOL-RA II, HAQ-A, and PHQ-9. The QOL-RA II was re-administered in 20 patients to evaluate reproducibility. Four hundred and thirty patients were included. Median QOL-RA was 6.6 (IQR 5.3-8). Mean time to complete it was 1.7 ± 0.57 min and to calculate it was 12 ± 1.7 s. It showed very good reliability (Cronbach's alpha 0.97), reproducibility (ICC, 0.96), and good correlation between the different items and the total questionnaire, without evidence of redundancy. Besides, QOL-RA II presented good correlation with EQ-5D-3L (Rho, 0.6) and moderate with DAS28 (Rho, 0.38), and CDAI (Rho, 0.46). Worse quality of life was observed in patients not doing physical activity, unemployed, and current smokers. Patients with higher disease activity had a significant poorer quality of life. Adjusting by age, sex and disease duration, unemployment, higher disease activity, disability, and the presence of depression were independently associated to worse quality of life. QOL-RA II demonstrated good construct validity, reproducibility, and reliability. It was easy to complete and calculate and does not require a license for its use, thus making it the optimal tool for assessing the quality of life in Spanish-speaking patients with RA. Key Points • The evaluation of quality of life is very important in patients with Rheumatoid Arthritis. • Most of the questionnaires used to assess the quality of life require a license to use. • QOL-RA II is a valid and simple questionnaire to evaluate the quality of life of patients with RA and does not require a license for its use.

Evaluation of the Educational Needs in Argentine Patients with Rheumatoid Arthritis Using the SpENAT Questionnaire. / Evaluación de las necesidades educacionales de los pacientes con artritis reumatoide mediante el cuestionario SpENAT.

BACKGROUND: The SpENAT, a Spanish version of the Educational Needs Assessment Tool, is a self-completed questionnaire that assesses educational needs (ENs) with the purpose of providing tailored and patient-centered information. It consists of 39 questions grouped into the 7 following domains: Pain management, Movement, Feelings, Arthritic process, Treatments, Self-help measures and Support system. OBJECTIVES: The objective of the study was to describe the ENs of rheumatoid arthritis (RA) patients using the SpENAT and to determine the main sources of information consulted by these patients. MATERIAL AND METHODS: Multicenter, observational, cross-sectional study. We included consecutive patients≥18 years with diagnosis of RA (ACR 87/ACR-EULAR 2010). Sociodemographic data, disease characteristics and clinimetric properties were recorded. All patients completed the SpENAT and were asked about the sources employed to obtain information about their disease. STATISTICAL ANALYSIS: Population characteristics were described. ENs were determined as percentages of the highest possible score for each domain. Needs for each domain according to sex, years of education, disease duration, use of biologicals and functional capacity were analyzed by means of ANOVA, and bivariate comparisons were made with Student's t-test and the Bonferroni correction. Correlation between domains was determined with the Spearman correlation coefficient. We compared patients' age by source of information with Student's t-test. RESULTS: We included 496 patients from 20 centers across the country. More ENs were observed in the domains of Movement, Feelings and the Arthritic process. Patients with higher educational level (>7 years) reported more ENs in the Arthritic process and Self-help measure domains. A higher functional impairment (HAQ-A≥0.87) was associated with more ENs in every domain. Patients with high activity showed more ENs than those in remission in the domains of Pain management, Movement, Feelings, Treatments and Support system, as well as those with low activity in Self-help measures and Support system domains. All SpENAT domains showed positive correlations among each other (P<.0001), the most important being Pain management/Movement and Treatments/Arthritic process (r≥0.7). The source of information most frequently consulted was the rheumatologist (93.95%); those who made use of Internet were on average younger (P=.0004). CONCLUSION: RA patients were very interested about knowing more about their disease. High functional impairment was associated with more ENs. Patients with high disease activity had higher EN levels in almost every domain. The rheumatologist was the main source of information for the patient with RA.

Una nueva herramienta para valorar la calidad de vida de pacientes con artritis reumatoidea que no requiere licencia: el cuestionario QOL-RA II (Quality of Life-Rheumatoid Arthritis Scale-II) / A new tool to assess quality of life in patients with rheumatoid arthritis that does not require a license: QOL-RA II (Quality of Life-Rheumatoid Arthritis Scale-II)

Recientemente, validamos el cuestionario Quality of Life-Rheumatoid Arthritis Scale (QOL-RA) y detectamos la presencia de algunas limitaciones. Por esta razón, con la autorización de la autora, cambiamos dos preguntas y desarrollamos una nueva versión en español: el QOL-RA II. Objetivo: Validar el QOL-RA II en una cohorte argentina de pacientes con Artritis Reumatoidea (AR). Material y métodos: Estudio de corte transversal. Se incluyeron pacientes ≥18 años de edad, con diagnóstico de AR según criterios ACR-EULAR 2010. Se consignaron datos sociodemográficos, comorbilidades, características clínicas y actividad de la enfermedad. Se administraron los cuestionarios EQ-5D-3L, QOL-RA II, HAQ-A y PHQ-9. A 20 pacientes se les re-administró el cuestionario a los 7 días de haber completado el primero para evaluar reproducibilidad. Análisis estadístico: Test T de Student, ANOVA, Chi². Correlación de Spearman. Alpha de Cronbach. Coeficiente de correlación intraclase. Regresión Logística Multinomial con modelo factorial completo. Regresión lineal múltiple. Resultados: Se incluyeron 430 pacientes, con un tiempo mediano (m) de evolución de 9 años (RIC: 4-16). La m del QOL-RA II fue 6,7 (RIC: 5,3-8). El tiempo promedio para completarlo fue de 1,7±0,57 minutos y para su cálculo de 12±1,7 segundos. Solo 9 (2,1%) pacientes no contestaron alguna pregunta. El cuestionario presentó excelente confiabilidad (α de Cronbach 0,97), reproducibilidad (CCI: 0,96) y buena correlación entre los diferentes ítems y el cuestionario total, sin evidencia de redundancia. QOL-RA II presentó además, buena correlación con EQ-5D-3L (Rho: 0,6), HAQ-A (Rho: 0,55) y PHQ-9 (Rho: 0,56) y moderada con los índices de actividad de la enfermedad DAS28-ERS (Rho: 0,38) y CDAI (Rho: 0,46). Se evidenció peor calidad de vida en aquellos pacientes que no realizaban actividad física (X 6,4±1,9 vs. 7±1,8, p <0,0001), en los desocupados (X 6,1±1,9 vs. 7±1,8, p <0,0001) y en los tabaquistas (X 6,2±1,7 vs. 6,7±1,9, p=0,03). Se observó una tendencia significativa a empeorar la calidad de vida a mayor actividad de la enfermedad. Ajustando por edad, sexo y tiempo de evolución de la enfermedad, las variables que se asociaron significativamente a peor calidad de vida fueron la desocupación, la mayor actividad de la enfermedad, la discapacidad funcional y la presencia de depresión. Conclusión: El QOL-RA II demostró buena validez de constructo, reproducibilidad. Fue fácil de completar y calcular. No se observó redundancia entre las preguntas ni influencia por la edad ni el tiempo de evolución de la enfermedad.

We have recently validated the Quality of Life-Rheumatoid Arthritis Scale (QOL-RA). We have found some limitations, that is why, with the author's permission, we have changed two questions and developed a new Spanish version, QOL-RA II. Objective: To validate the QOL-RA II in an Argentinean cohort of patients with Rheumatoid Arthritis (RA). Material and methods: Cross-sectional study. Patients ≥18 years old, with a diagnosis of RA according to ACR-EULAR 2010 criteria were included. Sociodemographic data, comorbidities, RA characteristics, disease activity current treatment were registered. Questionnaires were administered: EQ-5D-3L, QOL-RA, HAQ-A and PHQ-9. The QOL-RA II was re-administered in 20 patients to evaluate reproducibility. Statistical analysis: Student's T, ANOVA and Chi² tests. Spearman correlation. Cronbach's alpha. Reproducibility using ICC. Multinomial logistic regression with completed factorial model. Multiple linear regression. Results: 430 patients were included, with a median (m) disease duration of 8.9 years (IQR: 4-16). QOL-RA was m 6.6 (IQR: 5.3-8). Mean time to complete it was 1.7±0.57 minutes and to calculate it 12±17 seconds. Only 2.1% of the questionnaires presented missing answers. It showed very good reliability (Cronbach's alpha 0.97), reproducibility (ICC: 0.96) and good correlation between the different items and the total questionnaire, without evidence of redundancy. Besides, QOL-RA II presented good correlation with EQ-5D-3L (Rho: 0.6), HAQ-A (Rho: 0.55) and PHQ-9 (Rho: 0.56) and moderate with DAS28-ESR (Rho: 0.38) and CDAI (Rho: 0.46). Worse quality of life was observed in patients not doing physical activity (X 6.4±1.9 vs. 7±1.8, p <0.0001), unemployed (X 6.1±1.9 vs. 7±1.8, p <0.0001) and current smokers (X 6.2±1.7 vs. 6.7±1.9, p=0.03). Patients with higher disease activity had a significant poorer quality of life. Adjusting by age, sex and disease duration, unemployment, higher disease activity, disability and the presence of depression were independently associated to worse quality of life. Conclusions: QOL-RA II demonstrated good construct validity, reproducibility and reliability. It was easy to complete and calculate. There were no redundancy between questions and it was not influenced by age and disease duration.