High variability in Factor IX one-stage assay in samples spiked with nonacog beta pegol among different pairs of reagent/detection system.

INTRODUCTION: Haemophilia B (HB) is an X-linked hereditary bleeding disorder characterized by coagulation factor IX (FIX) deficiency. To improve the quality of life of patients and adherence to treatment, recombinant factor concentrates modified to extend their half-life have been developed, called extended half-life factors (EHL: extended half-life). Nonacog beta pegol (N9-GP) is a glycopegylated recombinant human FIX molecule that has a half-life of 93 h with a single dose and has shown a higher recovery percentage than other molecules. To diagnose and monitor the treatment of haemophiliac patients, FIX activity is determined with the one-stage clotting assay (OSA) and/or the chromogenic assay. The objective of this work, carried out in three centres, was to measure the recovery of N9-PG with 10 different activated partial thromboplastin time (APTT) reagents on three platforms, in samples spiked in vitro with N9-GP, at four different concentration levels. METHODS: It was measured the recovery of N9-GP with 10 different APTT reagents (polyphenol, ellagic acid, silice dioxide, colloidal silica as APTT activator on three platforms, in sample spiked in vitro with N9-GP. RESULTS: The results show heterogeneity in the activity of N9-GP measured by OSA with the different APTT reagents when the calibrations were performed with the specific calibrator of each coagulometer. A recovery percentage between 87% and 108% was obtained only with polyphenol and ellagic acid as activator in the three platforms evaluated. The other reagents studied overestimate or underestimate, with no clear profile. When a calibration curve was performed with a calibrator prepared from the N9-GP vial, all APTT reagents met the established recovery requirement. CONCLUSION: APTT reagents with polyphenol or ellagic acid as activator would be the only ones appropriate when using the commercially available OSA with specific calibrator to monitor patients treated with N9-GP.

Evaluation of an Online Educational Program for Parents and Caregivers of Children With Food Allergies.

BACKGROUND AND OBJECTIVE: The increasing prevalence of food allergy affects both patients and their families. Objective: The aim of this study was to evaluate the impact of an online educational program designed for parents and caregivers of children with food allergies. The program was developed by a multidisciplinary group comprising health care professionals, researchers, and expert patients under the participatory medicine model. MATERIAL AND METHODS: Participants took a 2-week online educational program covering major topics in food allergy management. General knowledge about the disease, symptoms, treatment, and topics relevant to families' daily lives were evaluated. The contents included educational videos, online forums, and live video chats. A pretest/posttest questionnaire survey was used to evaluate the impact of the program. RESULTS: A total of 207 participants enrolled in the educational program, which was completed by 130 (62.8%). Knowledge acquisition improved significantly following participation in the program in 15 out of 30 items (50%), reaching P<.001 for 8 items (26.7%). Of the 207 participants who started the program, 139 (67.1%) visited online forums, and 27.5% attended video chats. Average overall satisfaction with the educational program was 8.78 (on a scale of 0 to 10). CONCLUSIONS: The results obtained show that parents improved their knowledge in all areas of food allergy. The high level of satisfaction among participants suggests that digital learning tools are effective and motivational, enabling patients to acquire appropriate knowledge and thus increasing their quality of life.

Evaluation of an online educational program for parents and caregivers of children with food allergies

Background: The increasing prevalence of food allergy affects both patients and their families. Objective: The aim of this study was to evaluate the impact of an online educational program designed for parents and caregivers of children with food allergies. The program was developed by a multidisciplinary group comprising health care professionals, researchers, and expert patients under the participatory medicine model. Material and Methods: Participants took a 2-week online educational program covering major topics in food allergy management. General knowledge about the disease, symptoms, treatment, and topics relevant to families’ daily lives were evaluated. The contents included educational videos, online forums, and live video chats. A pretest/posttest questionnaire survey was used to evaluate the impact of the program. Results: A total of 207 participants enrolled in the educational program, which was completed by 130 (62.8%). Knowledge acquisition improved significantly following participation in the program in 15 out of 30 items (50%), reaching P<.001 for 8 items (26.7%). Of the 207 participants who started the program, 139 (67.1%) visited online forums, and 27.5% attended video chats. Average overall satisfaction with the educational program was 8.78 (on a scale of 0 to 10). Conclusions: The results obtained show that parents improved their knowledge in all areas of food allergy. The high level of satisfaction among participants suggests that digital learning tools are effective and motivational, enabling patients to acquire appropriate knowledge and thus increasing their quality of life (AU)

Introducción: El aumento de la prevalencia de la alergia alimentaria afecta no solo a los pacientes, sino también a sus familias. Objetivo: Evaluar el impacto de un programa educativo online, diseñado para padres y cuidadores de niños con alergia alimentaria. El programa fue desarrollado por un grupo multidisciplinario de profesionales sanitarios, investigadores y pacientes expertos, bajo el modelo de la medicina participativa. Material y métodos: Los participantes tomaron parte en un programa educativo online de dos semanas que cubría los principales temas relacionados con la alergia a alimentos. Se evaluó el conocimiento general acerca de la enfermedad y aspectos relevantes para la vida diaria de la familia. Los contenidos incluyeron: videos educativos, foros online y videoconferencias en directo. Para evaluar el impacto del programa se utilizó un cuestionario pre y post-intervención. Resultados: Un total de 207 participantes se inscribieron en el programa. De éstos 130 (62,8%) lo completaron. En 15 (50%) de los 30 aspectos evaluados se observó mejoría en el conocimiento previo, alcanzando una significación de <0,001 en 8 ítems (26,7%). De los 207 participantes que iniciaron el programa, 139 (67,1%) visitaron los foros online y 27,5% asistieron a las videoconferencias. La satisfacción media con el programa fue de 8,78 (escala 0 a 10). Conclusión: Los resultados demuestran la mejoría del conocimiento de los padres en los temas incluidos en el programa. La alta satisfacción obtenida sugiere que las herramientas de aprendizaje digital son eficaces y motivadoras para adquirir conocimientos y habilidades que permitan mejorar la calidad de vida (AU)

Evaluation of an educational programme with workshops for families of children with food allergies

BACKGROUND: When a child is diagnosed with a food allergy, prevention and patient education are the key interventions for maintaining the child's health and quality of life and that of his or her whole family. However, health education activities for the families of children with food allergies are very limited, and most of these activities have not been evaluated. Therefore, the objectives of the present study were to develop an educational programme, to empower its participants through workshops, and to evaluate its results. METHODS: Several types of educational materials were created specifically for the programme, called "Proyecto CESA" ("STOP-FAR Project: Stop Food-Induced Allergic Reactions"). The programme was carried out in seven Spanish cities and was attended by parents and caregivers. The workshops were led by physicians specialising in allergies and by expert patients. Afterwards, participant learning and satisfaction were evaluated based on questionnaires that were completed both before and after the workshops. RESULTS: A significant improvement was observed in 29 items out of 40 (McNemar's test). Participant satisfaction with the programme was also very high: 90% rated the course between 8 and 10 points out of a possible 10 (41% rated it as a 10). CONCLUSION: The face-to-face workshops, which included utilisation of educational materials, had positive results in terms of learning as well as in levels of satisfaction in participating families

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Evaluation of an educational programme with workshops for families of children with food allergies.

BACKGROUND: When a child is diagnosed with a food allergy, prevention and patient education are the key interventions for maintaining the child's health and quality of life and that of his or her whole family. However, health education activities for the families of children with food allergies are very limited, and most of these activities have not been evaluated. Therefore, the objectives of the present study were to develop an educational programme, to empower its participants through workshops, and to evaluate its results. METHODS: Several types of educational materials were created specifically for the programme, called "Proyecto CESA" ("STOP-FAR Project: Stop Food-Induced Allergic Reactions"). The programme was carried out in seven Spanish cities and was attended by parents and caregivers. The workshops were led by physicians specialising in allergies and by expert patients. Afterwards, participant learning and satisfaction were evaluated based on questionnaires that were completed both before and after the workshops. RESULTS: A significant improvement was observed in 29 items out of 40 (McNemar's test). Participant satisfaction with the programme was also very high: 90% rated the course between 8 and 10 points out of a possible 10 (41% rated it as a 10). CONCLUSION: The face-to-face workshops, which included utilisation of educational materials, had positive results in terms of learning as well as in levels of satisfaction in participating families.

Hemophilic chronic synovitis: therapy of hemarthrosis using endovascular embolization of knee and elbow arteries.

PURPOSE: Congenital hemophilia is a hereditary bleeding disorder that affects 1 in 5,000 males and is characterized by repetitive musculoskeletal bleeding episodes. Selective embolization of the knee and elbow arteries can prevent bleeding episodes. To evaluate the long-term efficacy of these procedures, we assessed the outcomes of 30 procedures performed in our center. METHODS: We performed 30 procedures in 27 hemophilic patients, including 23 knee, and 7 elbow procedures. To evaluate the efficacy of selective embolization of knee and elbow arteries in people with hemophilia, we analyzed the number of bleeding episodes during 12 months before the procedure compared with the amount of episodes that occurred 3, 6, and 12 months after embolization. RESULTS: Twenty-nine of 30 procedures were classified as successful. The median of 1.25 episodes per month (range 0-3) observed before the procedure was reduced to 0 (range 0-1.67; p < 0.001) at 3 months, 0.17 (range 0-1.67; p < 0.001) at 6 months, and 0.33 (range 0-1.67; p = 0.024) at 12 months. Three patients remained free of bleeding events for more than 6 months. Additionally, after the procedure there was a significant reduction in factor FVIII usage that sustained up to 12 months after the procedures. No serious adverse events were observed. CONCLUSIONS: Selective angiographic embolization of knee and elbow arteries is a feasible procedure that can prevent repetitive bleedings, which would translate in better joint outcomes for these patients.

Nicotinamida adenina dinucleótido (NADH) en pacientes con síndrome de fatiga crónica / Nicotinamide adenine dinucleotide (NADH) in patients with chronic fatigue syndrome

AntecedentesLa nicotinamida adenina dinucleótido (NADH) podría estar deplecionada en el síndrome de fatiga crónica. El objetivo del estudio fue evaluar la eficacia de la suplementación con NADH en estos pacientes.Material y métodosSe realizó un ensayo clínico, doble ciego, controlado con placebo de 3 meses de duración. Los pacientes fueron randomizados a NADH oral 20mg o placebo durante los 2 primeros meses. Se evaluó la intensidad de la fatiga, estado funcional, estado de ánimo, impacto funcional de la fatiga, calidad de vida, calidad del sueño, capacidad al ejercicio y reserva funcional, así como la opinión del investigador y pacientes sobre la eficacia de la intervención, antes y a los 30, 60 y 90 días del inicio del tratamiento. En la visita basal y a los 60 días (último día de tratamiento doble ciego) se realizó una prueba de esfuerzo.ResultadosSe incluyeron 86 enfermos de los cuales 77 concluyeron el estudio (edad media, 47 años; 72 mujeres). No se hallaron diferencias significativas en la mayoría de las variables estudiadas al finalizar el estudio. La administración de NADH se asoció a una disminución de estado de ansiedad de −1,0 puntos (p<0,05) y de −0,2 puntos (p=NS) en el grupo asignado a placebo. La frecuencia cardiaca máxima tras la prueba de esfuerzo disminuyó una media de −8,1l/min (p<0,05) en el grupo NADH y ascendió +1,7l/min en el grupo placebo (p=0,73). No se hallaron diferencias en la percepción de eficacia con NADH y placebo, por parte del investigador y pacientes.ConclusionesLa administración de NADH oral se asoció a una disminución de la ansiedad y de la frecuencia cardiaca máxima, tras una prueba de esfuerzo, en los pacientes con síndrome de fatiga crónica. Por el contrario, este tratamiento no modificó otras variables clínicas y el estado funcional global(AU)

BackgroundNicotinamide adenine dinucleotide (NADH) may be depleted in chronic fatigue syndrome (SFC). The purpose of the study was to evaluate the efficacy of supplementation with NADH in these patients.ResultsA total of 86 patients, 77 of whom completed the study (mean age, 47 years, 72 women) were enrolled. No significant differences were found in most of the variable studied at the end of the study. Administration of NADH was associated to a decrease in anxiety condition of −1.0 points (p<0.05) and of −0.2 points (p=NS) in the placebo assigned group. Maximum heart rate after the stress test decreased a mean of −8.1l/min (p<0.05) in the NADH group and increased by +1.7l/min in the placebo group (p=0.73). No differences were found in the perception of efficacy with NADH and placebo, by the investigator and patients.ConclusionsAdministration of oral NADH was associated to a decrease in anxiety and maximum heart rate, after a stress test in patients with CFS. On the contrary, this treatment did not modify other clinical variables and the global functional performance(AU)

[Nicotinamide adenine dinucleotide (NADH) in patients with chronic fatigue syndrome]. / Nicotinamida adenina dinucleótido (NADH) en pacientes con síndrome de fatiga crónica.

BACKGROUND: Nicotinamide adenine dinucleotide (NADH) may be depleted in chronic fatigue syndrome (SFC). The purpose of the study was to evaluate the efficacy of supplementation with NADH in these patients. MATERIAL AND METHODS: A double blind, placebo controlled, 3 month long clinical trial was conducted. The patients were randomized to oral NADH oral 20mg or placebo during the first two months. The intensity of the fatigue, functional performance, mood state, functional impact of the fatigue, quality of life, sleep quality, exercise capacity and functional reserve as well as the investigator's and patient's opinion on the efficacy of the intervention prior to and at 30, 60 and 90 days of the onset of the treatment were evaluated. A stress test was performed in the baseline visit and at 60 days (last day of the double blind treatment). RESULTS: A total of 86 patients, 77 of whom completed the study (mean age, 47 years, 72 women) were enrolled. No significant differences were found in most of the variable studied at the end of the study. Administration of NADH was associated to a decrease in anxiety condition of -1.0 points (p<0.05) and of -0.2 points (p=NS) in the placebo assigned group. Maximum heart rate after the stress test decreased a mean of -8.1l/min (p<0.05) in the NADH group and increased by +1.7l/min in the placebo group (p=0.73). No differences were found in the perception of efficacy with NADH and placebo, by the investigator and patients. CONCLUSIONS: Administration of oral NADH was associated to a decrease in anxiety and maximum heart rate, after a stress test in patients with CFS. On the contrary, this treatment did not modify other clinical variables and the global functional performance.