Additional file 1: Supplementary Fig. 1. Geographic distribution of the participants. Supplementa... more Additional file 1: Supplementary Fig. 1. Geographic distribution of the participants. Supplementary Fig. 2. Family, Couple, Patient, Spirituality and Social Networks Impact of PRD on caregivers. Supplementary Table. Results of the CAREGIVER questionnaire. Impact of PRD on caregivers compared by disease. Supplementary Results. Complementary description of the impacts by dimensions of the CAREGIVERS questionnaire.
Background Pediatric rheumatic disease (PRD) patients and their caregivers face a number of chall... more Background Pediatric rheumatic disease (PRD) patients and their caregivers face a number of challenges, including the consequences of the PRD in patients and the impact on multiple dimensions of the caregivers’ daily lives. The objective of this study is to measure the economic, psychological and social impact that PRD has on the caregivers of Mexican children. Methods This is a multicenter, cross-sectional study including primary caregivers of children and adolescents with PRD (JIA, JDM and JSLE) during April and November, 2019. A trained interviewer conducted the CAREGIVERS questionnaire, a specific, 28-item multidimensional tool validated to measure the impact on different dimensions of the lives of caregivers. Sociodemographic, clinical, and healthcare system data were collected for further analysis. Results Two hundred participants were recruited (women 169, 84.5%, aged 38 [IQR 33–44] years); 109 (54.5%) cared for patients with JIA, 28 (14%) JDM and 63 (31.5%) JSLE. The healthc...
Objective: To develop and validate the Mexican-Spanish version of the Rheumatoid Arthritis Qualit... more Objective: To develop and validate the Mexican-Spanish version of the Rheumatoid Arthritis Quality of Life questionnaire (RAQoL). Methods: The original UK English version of RAQoL was translated into Mexican-Spanish version by a bilingual translation panel. An independent lay panel reviewed the instrument’s item phrasing to ensure comprehensiveness and appropriateness in colloquial Mexican-Spanish. Structured cognitive debriefing interviews were conducted with 15 Rheumatoid Arthritis (RA) patients to assess face and content validity. Finally, an independent sample of RA patients completed the RAQoL and additional assessments were performed to assess reproducibility and construct validity. Results: Translation and adaptation was successful as both the lay panel and cognitive debriefing participants considered the new language version to be appropriate. Fifty-seven patients were included in the final evaluation of the Mexican-Spanish version of RAQoL (73.8% female, mean age 52.4 years...
OBJECTIVES To update the recommendations for the management of patients with Spondyloarthritis (S... more OBJECTIVES To update the recommendations for the management of patients with Spondyloarthritis (SpA) in the Mexican population, and identify which variables could influence patient management. MATERIAL AND METHODS A group of 15 experts in SpA translated, analyzed and modified the recommendations of the Mexican College of Rheumatology (CMR) and the International Society for the Assessment of Spondyloarthritis (ASAS)/European League Against Rheumatism (EULAR) 2016 group through a systematic review of the literature by two external reviewers during the period from 2015 to 2018 using the grade of recommendation, Oxford levels of evidence, percentage of concordance (Delphi). RESULTS Compared to previous recommendations, there were no significant changes from the year 2015. However, we modified the five fundamental principles and reduced the number of recommendations to ten by incorporating the first item in the text and combining five recommendations into two and adding a further recommendation. We confirmed the tendency to use glucocorticoids for patients with inflammatory activity and scarce access to biologicals. We identified the sociodemographic and clinical characteristics of patients with SpA and their influence on the application of the recommendations. CONCLUSIONS The ten recommendations of the CMR and the analysis of the characteristics of the Mexican patients with SpA focussed on step therapy, including pharmacological and non-pharmacological therapies, in a spectrum from easily accessible to high-tech substances available to a small percentage of the population.
Therapeutic advances in rheumatoid arthritis require periodic review of treatment guidelines. OBJ... more Therapeutic advances in rheumatoid arthritis require periodic review of treatment guidelines. OBJECTIVE To update the Mexican College of Rheumatology guidelines on the pharmacological treatment of rheumatoid arthritis. METHOD Board certified rheumatologists from different health institutions and regions of the country participated. Work teams were formed that reviewed the previous guidelines, elaborated new questions, reviewed the literature, and scored the evidence that was presented and discussed in plenary session. The conclusions were presented to infectologists, gynaecologists and patients. Recommendations were based on levels of evidence according to GRADE methodology. RESULTS Updated recommendations on the use of available medications for rheumatoid arthritis treatment in Mexico up to 2017 are presented. The importance of adequate and sustained control of the disease is emphasized and relevant safety aspects are described. Bioethical conflicts are included, and government action is invited to strengthen correct treatment of the disease. CONCLUSIONS The updated recommendations of the Mexican College of Rheumatology on the pharmacological treatment of rheumatoid arthritis incorporate the best available information to be used in the Mexican health care system.
OBJECTIVES To update the recommendations for the management of patients with Spondyloarthritis (S... more OBJECTIVES To update the recommendations for the management of patients with Spondyloarthritis (SpA) in the Mexican population, and identify which variables could influence patient management. MATERIAL AND METHODS A group of 15 experts in SpA translated, analyzed and modified the recommendations of the Mexican College of Rheumatology (CMR) and the International Society for the Assessment of Spondyloarthritis (ASAS)/European League Against Rheumatism (EULAR) 2016 group through a systematic review of the literature by two external reviewers during the period from 2015 to 2018 using the grade of recommendation, Oxford levels of evidence, percentage of concordance (Delphi). RESULTS Compared to previous recommendations, there were no significant changes from the year 2015. However, we modified the five fundamental principles and reduced the number of recommendations to ten by incorporating the first item in the text and combining five recommendations into two and adding a further recommendation. We confirmed the tendency to use glucocorticoids for patients with inflammatory activity and scarce access to biologicals. We identified the sociodemographic and clinical characteristics of patients with SpA and their influence on the application of the recommendations. CONCLUSIONS The ten recommendations of the CMR and the analysis of the characteristics of the Mexican patients with SpA focussed on step therapy, including pharmacological and non-pharmacological therapies, in a spectrum from easily accessible to high-tech substances available to a small percentage of the population.
Adaptar y validar la versión oficial del cuestionario Rheumatoid Arthritis Quality of Life (RAQoL... more Adaptar y validar la versión oficial del cuestionario Rheumatoid Arthritis Quality of Life (RAQoL) al español de México.La versión inglesa del RAQoL fue traducida al español por un panel bilingüe. Un segundo panel de individuos revisó y adaptó el fraseo de las preguntas al español cotidiano. Se realizaron entrevistas a 15 pacientes con artritis reumatoide (AR) para evaluar la validez de aspecto y contenido. El cuestionario fue aplicado en 2 ocasiones a 57 pacientes con AR para evaluar su reproducibilidad y validez de constructo.Se encontraron pocas dificultades en las etapas de traducción y adaptación del cuestionario. Las versiones preliminar y final fueron bien recibidas por el panel de referencia y por los pacientes entrevistados respectivamente. Un total de 57 pacientes participaron en la evaluación del instrumento final (73,8% mujeres, edad promedio 52,4 años, DE 14,1, duración de la AR de 2–27 años). El α de Cronbach para el RAQoL en español de México fue de 0,91 y la fiabilidad aplicación-reaplicación de 0,92, lo que sugiere que el cuestionario muestra interrelación homogénea entre sus componentes y que tiene niveles bajos de errores aleatorios de medición. El RAQoL en español de México pudo discernir a pacientes que difirieron en relación a la percepción de la severidad de su enfermedad, estado general de salud, calificación de su enfermedad el mismo día y si cursaban o no con una recaída al momento de la evaluación.El RAQoL en español de México fue bien recibido por pacientes con AR. La calidad del cuestionario adaptado lo muestra como un instrumento útil para ensayos clínicos de pacientes con AR.To develop and validate the Mexican-Spanish version of the Rheumatoid Arthritis Quality of Life questionnaire (RAQoL).The original UK English version of RAQoL was translated into Mexican-Spanish version by a bilingual translation panel. An independent lay panel reviewed the instrument's item phrasing to ensure comprehensiveness and appropriateness in colloquial Mexican-Spanish. Structured cognitive debriefing interviews were conducted with 15 Rheumatoid Arthritis (RA) patients to assess face and content validity. Finally, an independent sample of RA patients completed the RAQoL and additional assessments were performed to assess reproducibility and construct validity.Translation and adaptation was successful as both the lay panel and cognitive debriefing participants considered the new language version to be appropriate.Fifty-seven patients were included in the final evaluation of the Mexican-Spanish version of RAQoL (73.8% female, mean age 52.4 years, SD 14.1, RA duration range 2–27 years). Cronbach′s α for the new RAQoL was 0.91 and the test-retest reliability 0.92, indicating that the measure has good internal consistency and low random measurement error. The Mexican-Spanish version of RAQoL could discriminate between patients who differed on their perception of disease activity, general health status, current rating of perceived RA severity and whether or not they were experiencing a disease flare.The Mexican-Spanish version of RAQoL was well accepted by RA patients. The psychometric quality of the adapted questionnaire shows that it is suitable for use in clinical studies and trials of patients with RA.
ObjectiveWhile COVID-19 vaccination prevents severe infections, poor immunogenicity in immunocomp... more ObjectiveWhile COVID-19 vaccination prevents severe infections, poor immunogenicity in immunocompromised people threatens vaccine effectiveness. We analysed the clinical characteristics of patients with rheumatic disease who developed breakthrough COVID-19 after vaccination against SARS-CoV-2.MethodsWe included people partially or fully vaccinated against SARS-CoV-2 who developed COVID-19 between 5 January and 30 September 2021 and were reported to the Global Rheumatology Alliance registry. Breakthrough infections were defined as occurring ≥14 days after completion of the vaccination series, specifically 14 days after the second dose in a two-dose series or 14 days after a single-dose vaccine. We analysed patients’ demographic and clinical characteristics and COVID-19 symptoms and outcomes.ResultsSARS-CoV-2 infection was reported in 197 partially or fully vaccinated people with rheumatic disease (mean age 54 years, 77% female, 56% white). The majority (n=140/197, 71%) received messe...
Additional file 1: Supplementary Fig. 1. Geographic distribution of the participants. Supplementa... more Additional file 1: Supplementary Fig. 1. Geographic distribution of the participants. Supplementary Fig. 2. Family, Couple, Patient, Spirituality and Social Networks Impact of PRD on caregivers. Supplementary Table. Results of the CAREGIVER questionnaire. Impact of PRD on caregivers compared by disease. Supplementary Results. Complementary description of the impacts by dimensions of the CAREGIVERS questionnaire.
Background Pediatric rheumatic disease (PRD) patients and their caregivers face a number of chall... more Background Pediatric rheumatic disease (PRD) patients and their caregivers face a number of challenges, including the consequences of the PRD in patients and the impact on multiple dimensions of the caregivers’ daily lives. The objective of this study is to measure the economic, psychological and social impact that PRD has on the caregivers of Mexican children. Methods This is a multicenter, cross-sectional study including primary caregivers of children and adolescents with PRD (JIA, JDM and JSLE) during April and November, 2019. A trained interviewer conducted the CAREGIVERS questionnaire, a specific, 28-item multidimensional tool validated to measure the impact on different dimensions of the lives of caregivers. Sociodemographic, clinical, and healthcare system data were collected for further analysis. Results Two hundred participants were recruited (women 169, 84.5%, aged 38 [IQR 33–44] years); 109 (54.5%) cared for patients with JIA, 28 (14%) JDM and 63 (31.5%) JSLE. The healthc...
Objective: To develop and validate the Mexican-Spanish version of the Rheumatoid Arthritis Qualit... more Objective: To develop and validate the Mexican-Spanish version of the Rheumatoid Arthritis Quality of Life questionnaire (RAQoL). Methods: The original UK English version of RAQoL was translated into Mexican-Spanish version by a bilingual translation panel. An independent lay panel reviewed the instrument’s item phrasing to ensure comprehensiveness and appropriateness in colloquial Mexican-Spanish. Structured cognitive debriefing interviews were conducted with 15 Rheumatoid Arthritis (RA) patients to assess face and content validity. Finally, an independent sample of RA patients completed the RAQoL and additional assessments were performed to assess reproducibility and construct validity. Results: Translation and adaptation was successful as both the lay panel and cognitive debriefing participants considered the new language version to be appropriate. Fifty-seven patients were included in the final evaluation of the Mexican-Spanish version of RAQoL (73.8% female, mean age 52.4 years...
OBJECTIVES To update the recommendations for the management of patients with Spondyloarthritis (S... more OBJECTIVES To update the recommendations for the management of patients with Spondyloarthritis (SpA) in the Mexican population, and identify which variables could influence patient management. MATERIAL AND METHODS A group of 15 experts in SpA translated, analyzed and modified the recommendations of the Mexican College of Rheumatology (CMR) and the International Society for the Assessment of Spondyloarthritis (ASAS)/European League Against Rheumatism (EULAR) 2016 group through a systematic review of the literature by two external reviewers during the period from 2015 to 2018 using the grade of recommendation, Oxford levels of evidence, percentage of concordance (Delphi). RESULTS Compared to previous recommendations, there were no significant changes from the year 2015. However, we modified the five fundamental principles and reduced the number of recommendations to ten by incorporating the first item in the text and combining five recommendations into two and adding a further recommendation. We confirmed the tendency to use glucocorticoids for patients with inflammatory activity and scarce access to biologicals. We identified the sociodemographic and clinical characteristics of patients with SpA and their influence on the application of the recommendations. CONCLUSIONS The ten recommendations of the CMR and the analysis of the characteristics of the Mexican patients with SpA focussed on step therapy, including pharmacological and non-pharmacological therapies, in a spectrum from easily accessible to high-tech substances available to a small percentage of the population.
Therapeutic advances in rheumatoid arthritis require periodic review of treatment guidelines. OBJ... more Therapeutic advances in rheumatoid arthritis require periodic review of treatment guidelines. OBJECTIVE To update the Mexican College of Rheumatology guidelines on the pharmacological treatment of rheumatoid arthritis. METHOD Board certified rheumatologists from different health institutions and regions of the country participated. Work teams were formed that reviewed the previous guidelines, elaborated new questions, reviewed the literature, and scored the evidence that was presented and discussed in plenary session. The conclusions were presented to infectologists, gynaecologists and patients. Recommendations were based on levels of evidence according to GRADE methodology. RESULTS Updated recommendations on the use of available medications for rheumatoid arthritis treatment in Mexico up to 2017 are presented. The importance of adequate and sustained control of the disease is emphasized and relevant safety aspects are described. Bioethical conflicts are included, and government action is invited to strengthen correct treatment of the disease. CONCLUSIONS The updated recommendations of the Mexican College of Rheumatology on the pharmacological treatment of rheumatoid arthritis incorporate the best available information to be used in the Mexican health care system.
OBJECTIVES To update the recommendations for the management of patients with Spondyloarthritis (S... more OBJECTIVES To update the recommendations for the management of patients with Spondyloarthritis (SpA) in the Mexican population, and identify which variables could influence patient management. MATERIAL AND METHODS A group of 15 experts in SpA translated, analyzed and modified the recommendations of the Mexican College of Rheumatology (CMR) and the International Society for the Assessment of Spondyloarthritis (ASAS)/European League Against Rheumatism (EULAR) 2016 group through a systematic review of the literature by two external reviewers during the period from 2015 to 2018 using the grade of recommendation, Oxford levels of evidence, percentage of concordance (Delphi). RESULTS Compared to previous recommendations, there were no significant changes from the year 2015. However, we modified the five fundamental principles and reduced the number of recommendations to ten by incorporating the first item in the text and combining five recommendations into two and adding a further recommendation. We confirmed the tendency to use glucocorticoids for patients with inflammatory activity and scarce access to biologicals. We identified the sociodemographic and clinical characteristics of patients with SpA and their influence on the application of the recommendations. CONCLUSIONS The ten recommendations of the CMR and the analysis of the characteristics of the Mexican patients with SpA focussed on step therapy, including pharmacological and non-pharmacological therapies, in a spectrum from easily accessible to high-tech substances available to a small percentage of the population.
Adaptar y validar la versión oficial del cuestionario Rheumatoid Arthritis Quality of Life (RAQoL... more Adaptar y validar la versión oficial del cuestionario Rheumatoid Arthritis Quality of Life (RAQoL) al español de México.La versión inglesa del RAQoL fue traducida al español por un panel bilingüe. Un segundo panel de individuos revisó y adaptó el fraseo de las preguntas al español cotidiano. Se realizaron entrevistas a 15 pacientes con artritis reumatoide (AR) para evaluar la validez de aspecto y contenido. El cuestionario fue aplicado en 2 ocasiones a 57 pacientes con AR para evaluar su reproducibilidad y validez de constructo.Se encontraron pocas dificultades en las etapas de traducción y adaptación del cuestionario. Las versiones preliminar y final fueron bien recibidas por el panel de referencia y por los pacientes entrevistados respectivamente. Un total de 57 pacientes participaron en la evaluación del instrumento final (73,8% mujeres, edad promedio 52,4 años, DE 14,1, duración de la AR de 2–27 años). El α de Cronbach para el RAQoL en español de México fue de 0,91 y la fiabilidad aplicación-reaplicación de 0,92, lo que sugiere que el cuestionario muestra interrelación homogénea entre sus componentes y que tiene niveles bajos de errores aleatorios de medición. El RAQoL en español de México pudo discernir a pacientes que difirieron en relación a la percepción de la severidad de su enfermedad, estado general de salud, calificación de su enfermedad el mismo día y si cursaban o no con una recaída al momento de la evaluación.El RAQoL en español de México fue bien recibido por pacientes con AR. La calidad del cuestionario adaptado lo muestra como un instrumento útil para ensayos clínicos de pacientes con AR.To develop and validate the Mexican-Spanish version of the Rheumatoid Arthritis Quality of Life questionnaire (RAQoL).The original UK English version of RAQoL was translated into Mexican-Spanish version by a bilingual translation panel. An independent lay panel reviewed the instrument's item phrasing to ensure comprehensiveness and appropriateness in colloquial Mexican-Spanish. Structured cognitive debriefing interviews were conducted with 15 Rheumatoid Arthritis (RA) patients to assess face and content validity. Finally, an independent sample of RA patients completed the RAQoL and additional assessments were performed to assess reproducibility and construct validity.Translation and adaptation was successful as both the lay panel and cognitive debriefing participants considered the new language version to be appropriate.Fifty-seven patients were included in the final evaluation of the Mexican-Spanish version of RAQoL (73.8% female, mean age 52.4 years, SD 14.1, RA duration range 2–27 years). Cronbach′s α for the new RAQoL was 0.91 and the test-retest reliability 0.92, indicating that the measure has good internal consistency and low random measurement error. The Mexican-Spanish version of RAQoL could discriminate between patients who differed on their perception of disease activity, general health status, current rating of perceived RA severity and whether or not they were experiencing a disease flare.The Mexican-Spanish version of RAQoL was well accepted by RA patients. The psychometric quality of the adapted questionnaire shows that it is suitable for use in clinical studies and trials of patients with RA.
ObjectiveWhile COVID-19 vaccination prevents severe infections, poor immunogenicity in immunocomp... more ObjectiveWhile COVID-19 vaccination prevents severe infections, poor immunogenicity in immunocompromised people threatens vaccine effectiveness. We analysed the clinical characteristics of patients with rheumatic disease who developed breakthrough COVID-19 after vaccination against SARS-CoV-2.MethodsWe included people partially or fully vaccinated against SARS-CoV-2 who developed COVID-19 between 5 January and 30 September 2021 and were reported to the Global Rheumatology Alliance registry. Breakthrough infections were defined as occurring ≥14 days after completion of the vaccination series, specifically 14 days after the second dose in a two-dose series or 14 days after a single-dose vaccine. We analysed patients’ demographic and clinical characteristics and COVID-19 symptoms and outcomes.ResultsSARS-CoV-2 infection was reported in 197 partially or fully vaccinated people with rheumatic disease (mean age 54 years, 77% female, 56% white). The majority (n=140/197, 71%) received messe...
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