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1.
J Clin Rheumatol ; 2019 Jul 25.
Artigo em Inglês | MEDLINE | ID: mdl-31356399

RESUMO

BACKGROUND: Patients' experience with health care is becoming a key component for the provision of a patient-centered health care model. The aim of this study was to assess the experience with health care of patients with inflammatory arthritis and patient- and health care-related factors. METHODS: Patients responded to an anonymous survey provided by their treating clinical teams. The survey comprised the validated 12-item IEXPAC (Instrument to Evaluate the EXperience of PAtients with Chronic diseases) tool and demographic variables and health care-related characteristics that may affect patients' experience. RESULTS: A total of 359 of 625 surveys were returned (response rate, 57.4%). Overall, patient responses were positive (>60% gave "always/mostly" answers) for statements assessing the interaction between patients and health care professionals or patient self-management following health care professional guidance. However, positive patient responses for items regarding patient interaction with the health care system via the internet or with other patients were less than 13%. Only 25.6% of patients who had been hospitalized reported receiving a follow-up call or visit following discharge. In the bivariate analysis, experience scores were higher (better experience) in men, those seen by fewer specialists or by the same physician, and in patients treated with a fewer number of drugs or with subcutaneous/intravenous drugs. Multivariate analyses identified regular follow-up by the same physician and treatment with subcutaneous/intravenous drugs as variables associated with a better patient experience. CONCLUSIONS: This study identified areas of care for patients with inflammatory arthritis with the potential to improve patients' experience and highlights the importance of patient-physician relationships and comprehensive patient care.

3.
Ann Rheum Dis ; 77(7): 1032-1038, 2018 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-29463517

RESUMO

OBJECTIVES: The aim of this study was to adapt the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) into six European cultures and validate it as a common measure of quality of life in systemic sclerosis (SSc). METHODS: This was a seven-country (Germany, France, Italy, Poland, Spain, Sweden and UK) cross-sectional study. A forward-backward translation process was used to adapt the English SScQoL into target languages. SScQoL was completed by patients with SSc, then data were validated against the Rasch model. To correct local response dependency, items were grouped into the following subscales: function, emotion, sleep, social and pain and reanalysed for fit to the model, unidimensionality and cross-cultural equivalence. RESULTS: The adaptation of the SScQoL was seamless in all countries except Germany. Cross-cultural validation included 1080 patients with a mean age 58.0 years (SD 13.9) and 87% were women. Local dependency was evident in individual country data. Grouping items into testlets corrected the local dependency in most country specific data. Fit to the model, reliability and unidimensionality was achieved in six-country data after cross-cultural adjustment for Italy in the social subscale. The SScQoL was then calibrated into an interval level scale. CONCLUSION: The individual SScQoL items have translated well into five languages and overall, the scale maintained its construct validity, working well as a five-subscale questionnaire. Measures of quality of life in SSc can be directly compared across five countries (France, Poland Spain, Sweden and UK). Data from Italy are also comparable with the other five countries although require an adjustment.

4.
Clin Rheumatol ; 35(10): 2463-8, 2016 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-27567630

RESUMO

The aim of this study was to assess the diagnostic value of the Psoriatic Arthritis Screening Evaluation (PASE) and Early Psoriatic Arthritis Screening Questionnaire (EARP) questionnaires in the ultrasonographic detection of enthesitis, synovitis, and tenosynovitis. A cross-sectional study was done in a total of 96 consecutive patients. Double blind clinical examination and echographic assessment were performed. A receiver-operating characteristic (ROC) model analysis for the questionnaires was established using echographic findings as reference variable. The optimal diagnostic point was determined following a Youden analysis model from the obtained data, calculating sensitivity and specificity along with predictive values, likelihood ratio, and diagnostic odds ratio. A logistic regression analysis was used to determine possible predictor variables of enthesitis, synovitis, and tenosynovitis. When enthesitis, synovitis, and tenosynovitis were considered as one outcome for the diagnostic study of the PASE or EARP questionnaire, there were no statistically significant differences among the score of the study groups and the rest of patients. The PASE and EARP tests had a diagnostic performance for enthesitis, synovitis, and tenosynovitis that followed the expected pattern when the prevalence of findings is low. In these cases, the tests increase their negative predictive value, being particularly interesting in ruling out the disease.


Assuntos
Artrite Psoriásica/diagnóstico , Psoríase/complicações , Inquéritos e Questionários , Sinovite/diagnóstico , Tenossinovite/diagnóstico , Adulto , Idoso , Artrite Psoriásica/complicações , Artrite Psoriásica/diagnóstico por imagem , Estudos Transversais , Feminino , Humanos , Masculino , Programas de Rastreamento , Pessoa de Meia-Idade , Psoríase/diagnóstico por imagem , Sensibilidade e Especificidade , Sinovite/complicações , Sinovite/diagnóstico por imagem , Tenossinovite/complicações , Tenossinovite/diagnóstico por imagem , Ultrassonografia
6.
Musculoskeletal Care ; 14(3): 133-51, 2016 09.
Artigo em Inglês | MEDLINE | ID: mdl-26549188

RESUMO

INTRODUCTION: Cardiovascular risk (CVR) assessment and management in patients with inflammatory arthritis (IA) is recommended but European nurses' involvement in this role has not been well studied. AIM: The aim of the present study was to explore European nurses' role in assessing and managing CVR, in order to suggest topics for practice development and research in this area regarding persons with IA. METHODS: We searched Embase, Cinahl, Cochrane, PsycInfo and PubMed databases and included European articles from the past ten years if they described how nurses assess and/or manage CVR. In addition to the systematic review, we provided case studies from five different countries to illustrate national guidelines and nurses' role regarding CVR assessment and management in patients with IA. RESULTS: Thirty-three articles were included. We found that trained nurses were undertaking CVR assessment and management in different settings and groups of patients. The assessments include blood pressure, body mass index, waist circumference, glucose and lipid-profile, adherence to medication and behavioural risk factors (unhealthy diet, physical inactivity, alcohol and smoking). Different tools were used to calculate patients' risk. Risk management differed from brief advice to long-term follow-up. Nurses tended to take a holistic and individually tailored approach. Clinical examples of inclusion of rheumatology nurses in these tasks were scarce. CONCLUSION: Nurses undertake CVR assessment, communication and management in different types of patients. This is considered to be a highly relevant task for rheumatology nursing, especially in patients with IA. Further studies are needed to assess patients' perspective, effectiveness and cost-effectiveness of nurse-led CVR. Copyright © 2015 John Wiley & Sons, Ltd.


Assuntos
Artrite/complicações , Doenças Cardiovasculares/etiologia , Papel do Profissional de Enfermagem , Artrite/enfermagem , Europa (Continente) , Humanos , Medição de Risco
7.
Mod Rheumatol ; : 1-6, 2015 Nov 07.
Artigo em Inglês | MEDLINE | ID: mdl-26418571

RESUMO

OBJECTIVE: To assess effectiveness and safety of certolizumab PEGol (CZP) in rheumatoid arthritis (RA) patients after 12 months of treatment and to detect predictors of response. METHODS: Observational longitudinal prospective study of RA patients from 35 sites in Spain. Variables (baseline, 3- and 12-month assessment): sociodemographics, previous Disease Modifying Anti-Rheumatic Drug (DMARD) and previous Biological Therapies (BT) use; TJC, SJC, ESR, CRP, DAS28, SDAI. Response variables: TJC, SJC, CRP, ESR, and steroids dose reductions, EULAR Moderate/Good Response, SDAI response and remission, DAS28 remission. Safety variables: discontinuation due to side-effects. Descriptive, comparative and Logistic regression analyses were performed. RESULTS: We included 168 patients: 79.2% women, mean age 54.5 years (±13.2 SD), mean disease duration 7.5 years (±7.3 SD). Mean number of prior DMARD: 1.4 (±1.2 SD), mean number of prior BT was 0.8 (±1.1). Mean time on CZP was 9.8 months (±3.4 SD). A total of 71.4% were receiving CZP at 12-month assessment. Baseline predictors of response: lower prior number DMARD; low number prior BT; higher CRP, ESR, TJC, SJC, DAS28 and SDAI (p < 0.05) scores. A 25/46.4% Moderate/Good Response, a 20% SDAI remission, and a 44% DAS28 remission were observed. We observed 48 discontinuations (28.6%), 31 due to partial or complete ineffectiveness, and 17 due to side-effects. CONCLUSIONS: CZP showed benefit in severe RA patients, with significant reduction of all effectiveness parameters, despite the high prevalence of previous BT exposure in our series. We found CRP, ESR, prior DMARD/BT number, TJC, SJC, DAS28, and SDAI as baseline predictors of response. CZP was mostly well tolerated.

9.
Br J Nurs ; 22(14): 813-7, 2013 Jul 25-Aug 7.
Artigo em Inglês | MEDLINE | ID: mdl-24260991

RESUMO

Rheumatoid arthritis (RA) is a chronic, multi-system inflammatory disease. The incidence and prevalence of RA varies considerably between geographic areas and over time; the prevalence of RA in adults aged > 20 years in Spain is around 0.5% (Carmona et al, 2002). People with RA also have extra-articular manifestations, presenting an increased cardiovascular morbidity and mortality risk; therefore, cardiovascular risk screening and management strategies are necessary in individuals with RA. The importance of interventions in the management of people with RA and cardiovascular risk factors is recognised by the European League Against Rheumatism (EULAR) recommendations (Peters et al, 2010). Rheumatology specialist nurses are well placed to include routine cardiovascular risk assessment for people with RA attending clinic, and to provide educational interventions to reduce cardiovascular risk, such as smoking cessation, weight loss, eating a balanced, low-fat diet and exercising regularly.


Assuntos
Artrite Reumatoide/enfermagem , Doenças Cardiovasculares/enfermagem , Adulto , Artrite Reumatoide/complicações , Doenças Cardiovasculares/complicações , Doenças Cardiovasculares/epidemiologia , Enfermagem Baseada em Evidências , Humanos , Papel do Profissional de Enfermagem , Poder (Psicologia) , Fatores de Risco , Autocuidado , Autoeficácia , Espanha/epidemiologia , Especialidades de Enfermagem , Adulto Jovem
10.
Enferm Clin ; 23(4): 164-9, 2013 Jul-Aug.
Artigo em Espanhol | MEDLINE | ID: mdl-23916813

RESUMO

OBJECTIVES: The aims of this study are to evaluate the level of fear of post-injection pain prior to the administration, the difficulty in handling the device, and the level of satisfaction of patients using a pre-filled syringe versus an etanercept pen, as well as to evaluate the usefulness of the training given by nursing staff prior to starting with the pen, and the preferences of patients after using both devices. METHOD: A prospective study was designed to follow-up a cohort of patients during a 6 months period. The data was collected using questionnaires and analyzed with SPSS 18.00. Rank and McNemar tests were performed. Statistical significance was pre-set at an α level of 0.05. RESULTS: A total of 29 patients were included, of whom 69% female, and with a mean age 52.5±10.9 years. Of these, 48% had rheumatoid arthritis, 28% psoriatic arthritis, 21% ankylosing spondylitis, and 3% undifferentiated spondyloarthropathy. There were no statistically significant differences either with the fear or pain or handling of the device between the syringe and the pen (P=.469; P=.812; P=.169 respectively). At 6 months, 59% of patients referred to being satisfied or very satisfied with the pen. Almost all (93%) found useful or very useful the training given by nursing staff prior to using the pen, and 55% preferred the pen over the pre-filled syringe. CONCLUSIONS: The etanercept pen is another subcutaneous device option for patients with chronic arthritis. According to the present study, nursing educational workshops before starting this therapy are recommended.


Assuntos
Anti-Inflamatórios não Esteroides/administração & dosagem , Artrite/tratamento farmacológico , Imunoglobulina G/administração & dosagem , Preferência do Paciente , Receptores do Fator de Necrose Tumoral/administração & dosagem , Doença Crônica , Educação em Enfermagem , Desenho de Equipamento , Etanercepte , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Seringas
11.
Enferm. clín. (Ed. impr.) ; 23(4): 164-169, jul.-agos. 2013. tab, ima
Artigo em Espanhol | IBECS | ID: ibc-114838

RESUMO

Objetivos Evaluar el temor previo a la administración, dolor postinyección, la dificultad de manejo y el grado de satisfacción de jeringa versus pluma de etanercept subcutáneo. Monitorizar la utilidad de la formación proporcionada por enfermería previa al inicio de la pluma y las preferencias de los pacientes tras haber utilizado ambos dispositivos. Método Estudio prospectivo de una cohorte de pacientes durante 6 meses. La recogida de datos se hizo a través de cuestionarios. Análisis estadístico: SPSS 18.00. Se utilizaron la prueba de rangos y la de McNemar, considerándose como nivel de significación un α = 0,05. Resultados Se incluyeron 29 sujetos, 69% mujeres, con una edad media de 52,5 ± 10,9 años. El 48% eran artritis reumatoide, el 28% artritis psoriásica, el 21% espondilitis anquilosante y el 3% espondiloartropatía indiferenciada. Comparando el dispositivo de jeringa con el de pluma, no se encontraron diferencias estadísticamente significativas ni en el temor, ni en el dolor, ni en la dificultad de manejo del dispositivo (p = 0,469; p = 0,812 y p = 0,169 respectivamente). A los 6 meses, el 59% de los pacientes refirieron estar satisfechos o muy satisfechos con la pluma, el 93% encontraron el taller de enfermería útil o muy útil y el 55% prefirieron la pluma. Conclusiones La pluma de etanercept es otra opción de dispositivo subcutáneo para los pacientes con artritis crónica. El presente trabajo sugiere que los talleres educacionales por enfermería previos al inicio de dicha terapia subcutánea son recomendables (AU)


Objectives The aims of this study are to evaluate the level of fear of post-injection pain prior to the administration, the difficulty in handling the device, and the level of satisfaction of patients using a pre-filled syringe versus an etanercept pen, as well as to evaluate the usefulness of the training given by nursing staff prior to starting with the pen, and the preferences of patients after using both devices. Method A prospective study was designed to follow-up a cohort of patients during a 6 months period. The data was collected using questionnaires and analyzed with SPSS 18.00. Rank and McNemar tests were performed. Statistical significance was pre-set at an α level of 0.05. Results A total of 29 patients were included, of whom 69% female, and with a mean age 52.5 ± 10.9 years. Of these, 48% had rheumatoid arthritis, 28% psoriatic arthritis, 21% ankylosing spondylitis, and 3% undifferentiated spondyloarthropathy. There were no statistically significant differences either with the fear or pain or handling of the device between the syringe and the pen (P = .469; P = .812; P = .169 respectively). At 6 months, 59% of patients referred to being satisfied or very satisfied with the pen. Almost all (93%) found useful or very useful the training given by nursing staff prior to using the pen, and 55% preferred the pen over the pre-filled syringe. Conclusions The etanercept pen is another subcutaneous device option for patients with chronic arthritis. According to the present study, nursing educational workshops before starting this therapy are recommended (AU)


Assuntos
Humanos , Injeções , Artrite/tratamento farmacológico , Espondilite Anquilosante/tratamento farmacológico , Artrite Reumatoide/tratamento farmacológico , Fator de Necrose Tumoral alfa/antagonistas & inibidores , Estudos Prospectivos , Satisfação do Paciente
12.
Reumatol. clín. (Barc.) ; 9(2): 80-84, mar.-abr. 2013.
Artigo em Espanhol | IBECS | ID: ibc-110337

RESUMO

Introducción. El uso de biológicos ha permitido conocer de manera exhaustiva su seguridad gracias a registros como BIOBADASER. El presente trabajo permite, con un estudio observacional de cohortes, describir el perfil de seguridad perinfusional de dichos tratamientos por vía intravenosa. Objetivos. Conocer el perfil de seguridad en la práctica clínica, tras la administración de biológicos por vía intravenosa y durante las 24 h posteriores. Material y métodos. Cohorte transversal de 114 pacientes con AR tratados con agentes biológicos (criterios ACR) durante un mes de 2009 por enfermería de hospital de día de 12 centros hospitalarios catalanes. Se analizaron la edad, el sexo, los tratamientos actuales y previos, los datos de vacunación previa y la premedicación. Se registró también cualquier acontecimiento adverso (AA) durante la administración o en las 24 h posteriores. Se clasificó según el diccionario internacional MedDRAv11.0 y se describieron la intensidad (leve, moderada, severa), la relación con la administración del fármaco según el algoritmo de Karch y Lasagna (no relacionada, improbable, posible, probable, definitiva) y las medidas emprendidas. El análisis estadístico se realizó mediante SPSS 18.0. Resultados. Ciento once con criterios de inclusión (edad media ± desviación estándar 56,06 ± 12,12 años), 90 mujeres (81,1%) y evolución de 11,97 ± 7,95 años; 24 pacientes (21,6%) con antecedentes de alergia. Se observaron 12 AA en 7 pacientes, 9 de ellos durante la administración y 3 en las 24 h posteriores. No hubo ningún acontecimiento adverso grave y uno de los AA se calificó de intensidad moderada (urticaria). El resto de los AA fueron de intensidad leve (AU)


Introduction: The Biologics used in the management of rheumatoid arthritis (RA) in recent years, have comprehensively permitted to understand its security, as shown in registries such as BIOBADASER. The present manuscript represents an observational cohort study to describe the safety perinfusional profile of those intravenous treatments. Objectives: To confirm the safety profile of biological therapies in routine clinical practice, after the administration of intravenous drugs and 24 hours post-administration. Material and methods: We evaluated a cross-sectional cohort of 114 patients with RA (according to the American College of Rheumatology ACR criteria), attending within one month in 2009 the nursing clinics of day care hospital of 12 Catalonian hospitals. All patients were treated with intravenous biological agents. We recorded the age, sex, current and previous drug treatments, we also collected data about previous vaccination and premedication received and any adverse event occurring at the time of drug administration or within 24 hours. If an adverse event occurred, was categorized by MedDRAv11.0 International Dictionary, and categorized in terms of intensity (mild, moderate, severe), relationship to drug administration according to Karch and Lasagna algorithm (unrelated, unlikely, possible, probable, definite) and the further measures taken. Results: 111 patients met the inclusion criteria, with a mean age of 56.06 years (SD: 12.12), 90 of them women (81.1%) and mean time since diagnosis of the disease of 11.97 years (SD: 7.95). 24 patients (21.6%) had a history of allergy. 12 adverse events were observed in 7 patients, 9 of which at the time of administration and 3 in 24 hours after. There were no serious adverse events and only one of the adverse events (AEs) was rated as moderate (urticaria). The remaining AA were mild (AU)


Assuntos
Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Terapia Biológica/métodos , Terapia Biológica , Artrite Reumatoide/terapia , Hospital Dia , Consentimento Livre e Esclarecido/normas , Terapia Biológica/tendências , Estudos de Coortes , Estudos Transversais/métodos , Estudos Transversais , Pré-Medicação/métodos , Pré-Medicação
13.
Reumatol Clin ; 9(2): 80-4, 2013 Mar-Apr.
Artigo em Inglês, Espanhol | MEDLINE | ID: mdl-23099285

RESUMO

INTRODUCTION: The Biologics used in the management of rheumatoid arthritis (RA) in recent years, have comprehensively permitted to understand its security, as shown in registries such as BIOBADASER. The present manuscript represents an observational cohort study to describe the safety perinfusional profile of those intravenous treatments. OBJECTIVES: To confirm the safety profile of biological therapies in routine clinical practice, after the administration of intravenous drugs and 24 hours post-administration. MATERIAL AND METHODS: We evaluated a cross-sectional cohort of 114 patients with RA (according to the American College of Rheumatology ACR criteria), attending within one month in 2009 the nursing clinics of day care hospital of 12 Catalonian hospitals. All patients were treated with intravenous biological agents. We recorded the age, sex, current and previous drug treatments, we also collected data about previous vaccination and premedication received and any adverse event occurring at the time of drug administration or within 24 hours. If an adverse event occurred, was categorized by MedDRAv11.0 International Dictionary, and categorized in terms of intensity (mild, moderate, severe), relationship to drug administration according to Karch and Lasagna algorithm (unrelated, unlikely, possible, probable, definite) and the further measures taken. RESULTS: 111 patients met the inclusion criteria, with a mean age of 56.06 years (SD: 12.12), 90 of them women (81.1%) and mean time since diagnosis of the disease of 11.97 years (SD: 7.95). 24 patients (21.6%) had a history of allergy. 12 adverse events were observed in 7 patients, 9 of which at the time of administration and 3 in 24 hours after. There were no serious adverse events and only one of the adverse events (AEs) was rated as moderate (urticaria). The remaining AA were mild.


Assuntos
Anticorpos Monoclonais Murinos/efeitos adversos , Anticorpos Monoclonais/efeitos adversos , Antirreumáticos/efeitos adversos , Artrite Reumatoide/tratamento farmacológico , Imunoconjugados/efeitos adversos , Abatacepte , Adulto , Idoso , Anticorpos Monoclonais/uso terapêutico , Anticorpos Monoclonais Murinos/uso terapêutico , Antirreumáticos/uso terapêutico , Artrite Reumatoide/enfermagem , Estudos de Coortes , Estudos Transversais , Monitoramento de Medicamentos , Feminino , Humanos , Imunoconjugados/uso terapêutico , Infliximab , Infusões Intravenosas , Masculino , Pessoa de Meia-Idade , Vigilância de Produtos Comercializados , Rituximab , Resultado do Tratamento
15.
Metas enferm ; 10(4): 19-23, mayo 2007. tab, graf
Artigo em Espanhol | IBECS | ID: ibc-70425

RESUMO

La Artritis Reumatoide (AR) es una enfermedad crónica querequiere un enfoque multidisciplinar para el éxito de su manejo.La Educación para la Salud (EpS) y el ejercicio físicoforman parte del tratamiento adicional en el paciente con artritisreumatoide, por lo que el profesional de Enfermeríatiene un papel fundamental en este ámbito.Los objetivos de esta revisión bibliográfica son: enfatizar laimportancia del rol de la enfermera y del resto de equipomultidisciplinar en este campo; demostrar la eficacia y losbeneficios de la EpS y el ejercicio en los pacientes con artritisreumatoide y, finalmente, establecer recomendacionesde ejercicio generales basadas en la evidencia


Rheumatoid Arthritis (RA) is a condition requiring a multidisciplinaryapproach for successful management. HealthEducation and physical exercise are part of the additionaltreatment in patients with rheumatoid arthritis, with thenursing professional playing a fundamental role in this scopeof care.The objectives of this review of the literature are: to emphasisethe importance of the role of the nurse and othermembers of the multidisciplinary team in this field; to demonstratethe efficacy and benefits of health education and physicalexercise in patients with Rheumatoid arthritis and lastlyto establish evidence-based general recommendations for exercising (AU)


Assuntos
Humanos , Equipe de Assistência ao Paciente , Artrite Reumatoide/terapia , Terapia por Exercício , Educação em Saúde , Medicina Baseada em Evidências , Doença Crônica
16.
Metas enferm ; 10(3): 19-23, abr. 2007. ilus
Artigo em Espanhol | IBECS | ID: ibc-055546

RESUMO

La Artritis Reumatoide (AR) es una enfermedad crónica que requiere un enfoque ultidisciplinar para el éxito de su manejo. La Educación para la Salud (EpS) y el ejercicio físico forman parte del tratamiento adicional en el paciente con artritis reumatoide, por lo que el profesional de Enfermería tiene un papel fundamental en este ámbito. Los objetivos de esta revisión bibliográfica son: enfatizar la importancia del rol de la enfermera y del resto de equipo multidisciplinar en este campo; demostrar la eficacia y los beneficios de la EpS y el ejercicio en los pacientes con artritis reumatoide y, finalmente, establecer recomendaciones de ejercicio generales basadas en la evidencia


Rheumatoid Arthritis (RA) is a condition requiring a multidisciplinary approach for successful management. Health Education and physical exercise are part of the additional treatment in patients with rheumatoid arthritis, with the nursing professional playing a fundamental role in this scope of care. The objectives of this review of the literature are: to emphasise the importance of the role of the nurse and other members of the multidisciplinary team in this field; to demonstrate the efficacy and benefits of health education and physical exercise in patients with Rheumatoid arthritis and lastly to establish evidence-based general recommendations for exercising


Assuntos
Humanos , Artrite Reumatoide/terapia , Terapia por Exercício/métodos , Cuidados de Enfermagem/métodos , Educação de Pacientes como Assunto/métodos
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