Perceived quality of life by patients with immune-mediated inflammatory diseases treated with biological therapies. SACVINFA study.

OBJECTIVES: To evaluate health-related quality of life perceived by patients with the most prevalent immune-mediated inflammatory diseases in Spain: inflammatory bowel disease (IBD), psoriasis (Ps), psoriatic arthritis (AP), rheumatoid arthritis (RA), and spondyloarthropathies (SpAs), and to determine the factors that influence patient quality of life. METHODS: The SACVINFA study (SA=satisfaction, CV=quality of life, IN=immune-mediated, FA=pharmacy) consisted of an observational study conducted in 4 hospitals in the Community of Madrid. A cross-sectional analysis was made for adult patients diagnosed with an immune-mediated inflammatory disease who attended the Pharmacy Service. Quality of life was assessed using the EQ-5D-5L questionnaire (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression) and specific questionnaires: SIBDQ-9, DLQI, PsAQoL, QoL-RA, and ASQoL. RESULTS: A total of 578 patients were analysed (inflammatory bowel disease=25.3%; psoriasis=19.7%; spondyloarthropathies=18.7%; rheumatoid arthritis=18.5%; psoriatic arthritis=17.8%). The mean age (standard deviation) was 49.8 (12.3) years and 50.7% were male. The average score (standard deviation) for the global EQ-5D-5L was 0.771 (0.2) and the mean (standard deviation) visual analogue scale score was 71.5 (20.0). Type of immune-mediated inflammatory diseases was associated with differences in quality of life showing psoriasis and inflammatory bowel disease higher values of EQ5D-5L than psoriatic arthritis, rheumatoid arthritis, and spondyloarthropathies, p<.05 in all comparisons. Patients with RA, IBD, and Ps achieved 70% of the maximum score, while patients with PsA and SpAs did not reach 50% of the maximum possible score. Female gender, a state of moderate/severe disease severity, an older age, and a higher number of previous treatments were correlated with worse quality of life. Conversely, persistence to current treatment correlated with better quality of life. CONCLUSIONS: Patients with immune-mediated inflammatory diseases have markedly affected quality of life, mainly in the pain/discomfort dimension, especially in those immune-mediated inflammatory diseases with a rheumatological component.

Implementation of a parenteral nutrition home care programme in a tertiary hospital / Implementación de un programa de atención domiciliaria de nutrición parenteral en un hospital de tercer nivel

Aim: the objective of this study was to describe the results of the implementation of a home parenteral nutrition (HPN) care programme (Nutrihome©) in a cohort of patients treated at a tertiary hospital. Methods: retrospective study of the patients included in Nutrihome© at Hospital General Universitario Gregorio Marañón, Madrid, Spain. Nutrihome consists of different modules including pre-discharge nursing hospital visits and nursing home visits, deliveries of the infusion pump, consumables and parenteral nutrition bags, patient training, weekly scheduled nursing home visits, scheduled nursing phone calls, stock control phone calls and 24-hour on-call line manned by the nurses. Results: the study included 8 (75 % women) and 10 (70 % women) patients in the Nutrihome© pilot and Nutrihome© programme, respectively. A total 37 adverse events were reported during Nutrihome© pilot, 26 of which were technical, 9 clinical, 1 was catheter-related and 1 other event. Nutrihome© programme registered a total of 107 adverse events reported, 57 of which were technical, 21 clinical, 16 were catheter-related and 13 were other events. A total of 99 % of these events were solved by Nutrihome© via phone calls or home visits. Conclusions: Nutrihome© programme has been extremely useful during this pandemic, facilitaing both the start of HPN and training at the patient home without the need for hospitalisation. Additionally, the adverse events reported and solved by Nutrihome© not only reduced the physicians’ burden during those tough times and the patients´ stress of being hospitalised during a pandemic, but supported the entire healthcare system. (AU)

Objetivo: el objetivo de este estudio fue describir los resultados de la implementación de un programa de cuidados de nutrición parenteral domiciliaria (NPD) (Nutrihome©) en una cohorte de pacientes atendidos en un hospital terciario. Métodos: estudio retrospectivo de los pacientes incluidos en Nutrihome© en el Hospital General Universitario Gregorio Marañón de Madrid (España). Nutrihome consta de diferentes módulos que incluyen visitas de enfermería previas al alta y visitas al domicilio, entregas de la bomba de infusión, consumibles y bolsas de nutrición parenteral, formación del paciente, visitas semanales al domicilio programadas, llamadas telefónicas de enfermería programadas, llamadas telefónicas de control de existencias y atención telefónica de enfermería las 24 horas al día. Resultados: el estudio incluyó a 8 (75 % mujeres) y 10 (70 % mujeres) pacientes en el piloto Nutrihome© y en el programa Nutrihome©, respectivamente. Durante el piloto, se registraron un total de 37 eventos adversos, de los cuales 26 fueron técnicos, 9 clínicos, 1 relacionado con el catéter y 1 otro evento. Durante el programa Nutrihome©, se registró un total de 107 eventos adversos, de los cuales 57 fueron técnicos, 21 clínicos, 16 relacionados con el catéter y 13 otros eventos. El 99 % de estos eventos fueron resueltos por Nutrihome© por teléfono o mediante visitas a domicilio. Conclusiones: el programa Nutrihome© ha sido de gran utilidad durante esta pandemia, posibilitando tanto el inicio de la NPD como la formación en el domicilio del paciente sin necesidad de hospitalización. Además, los eventos adversos descritos y resueltos por Nutrihome© no solo redujeron la carga de los médicos durante esos tiempos difíciles y el estrés de los pacientes derivado de estar hospitalizados durante la pandemia, sino que fue un apoyo para todo el sistema de salud. (AU)

Implementation of a parenteral nutrition home care programme in a tertiary hospital.

Introduction: Aim: the objective of this study was to describe the results of the implementation of a home parenteral nutrition (HPN) care programme (Nutrihome©) in a cohort of patients treated at a tertiary hospital. Methods: retrospective study of the patients included in Nutrihome© at Hospital General Universitario Gregorio Marañón, Madrid, Spain. Nutrihome consists of different modules including pre-discharge nursing hospital visits and nursing home visits, deliveries of the infusion pump, consumables and parenteral nutrition bags, patient training, weekly scheduled nursing home visits, scheduled nursing phone calls, stock control phone calls and 24-hour on-call line manned by the nurses. Results: the study included 8 (75 % women) and 10 (70 % women) patients in the Nutrihome© pilot and Nutrihome© programme, respectively. A total 37 adverse events were reported during Nutrihome© pilot, 26 of which were technical, 9 clinical, 1 was catheter-related and 1 other event. Nutrihome© programme registered a total of 107 adverse events reported, 57 of which were technical, 21 clinical, 16 were catheter-related and 13 were other events. A total of 99 % of these events were solved by Nutrihome© via phone calls or home visits. Conclusions: Nutrihome© programme has been extremely useful during this pandemic, facilitaing both the start of HPN and training at the patient home without the need for hospitalisation. Additionally, the adverse events reported and solved by Nutrihome© not only reduced the physicians' burden during those tough times and the patients´ stress of being hospitalised during a pandemic, but supported the entire healthcare system.

Introducción: Objetivo: el objetivo de este estudio fue describir los resultados de la implementación de un programa de cuidados de nutrición parenteral domiciliaria (NPD) (Nutrihome©) en una cohorte de pacientes atendidos en un hospital terciario. Métodos: estudio retrospectivo de los pacientes incluidos en Nutrihome© en el Hospital General Universitario Gregorio Marañón de Madrid (España). Nutrihome consta de diferentes módulos que incluyen visitas de enfermería previas al alta y visitas al domicilio, entregas de la bomba de infusión, consumibles y bolsas de nutrición parenteral, formación del paciente, visitas semanales al domicilio programadas, llamadas telefónicas de enfermería programadas, llamadas telefónicas de control de existencias y atención telefónica de enfermería las 24 horas al día. Resultados: el estudio incluyó a 8 (75 % mujeres) y 10 (70 % mujeres) pacientes en el piloto Nutrihome© y en el programa Nutrihome©, respectivamente. Durante el piloto, se registraron un total de 37 eventos adversos, de los cuales 26 fueron técnicos, 9 clínicos, 1 relacionado con el catéter y 1 otro evento. Durante el programa Nutrihome©, se registró un total de 107 eventos adversos, de los cuales 57 fueron técnicos, 21 clínicos, 16 relacionados con el catéter y 13 otros eventos. El 99 % de estos eventos fueron resueltos por Nutrihome© por teléfono o mediante visitas a domicilio. Conclusiones: el programa Nutrihome© ha sido de gran utilidad durante esta pandemia, posibilitando tanto el inicio de la NPD como la formación en el domicilio del paciente sin necesidad de hospitalización. Además, los eventos adversos descritos y resueltos por Nutrihome© no solo redujeron la carga de los médicos durante esos tiempos difíciles y el estrés de los pacientes derivado de estar hospitalizados durante la pandemia, sino que fue un apoyo para todo el sistema de salud.

Design and implementation of a mobile app for the pharmacotherapeutic follow-up of patients diagnosed with immune-mediated inflammatory diseases: eMidCare.

Background: Pharmacotherapeutic management of immune-mediated inflammatory diseases (IMID) has become more complex due to the development of new treatments, such as biological therapies. Mobile health, especially apps, can provide IMID patients with greater autonomy and facilitate communication with healthcare professionals. Our objective was to design and implement an app for remote monitoring and communication with IMID patients. Methods: A multidisciplinary group was created to design and develop an app for IMID patients in a tertiary hospital. The app functionalities were identified through a focus group with IMID patients and through an observational, descriptive study of available apps for IMID patients at App Store and Play Store platforms. Once the app was designed and developed, we offered the app to IMID patients who initiated a new biological therapy. The inclusion period was from December 2020 to August 2021. We performed an observational, longitudinal study to assess the app's impact on medication safety, communication, satisfaction, and usability. Results: We designed an app (eMidCare®) with the following modules: My Medication, My Questionnaires, Adverse Events, Useful Information, Messages, and Patient Profile. A total of 85 patients were installed with the app. The median (range) follow-up time for app use was 123 (5-270) days. In the My Medication module, 100% of patients registered their biological therapy and 25.9% also used this module to record each dose of medication administered. A total of 82 adverse events (AEs) were registered. Thirty-two percent of the patients registered at least 1 AE. The most frequent AEs were fatigue, injection site reaction, headache, and nausea. Fifty-two percent of patients used the Messages module to communicate with healthcare professionals. The most frequent messages concerned doubts about managing AEs (26.2%) and drug interactions (18.9%). The satisfaction survey yielded a median (range) score of 9.1 (7-10) out of 10. Conclusions: We developed an app, eMidCare®, which reminds patients to take their medication, enables them to record AEs, and helps them communicate with healthcare professionals. Approximately one-third of the patients registered the administration of the biological therapies and registered at least 1 AE. The most used and most satisfactory functionality was communication with health professionals.

Evaluation of the hospital care quality perceived by patients with immune-mediated inflammatory diseases from the pharmacy service. SACVINFA study.

WHAT IS KNOWN AND OBJECTIVE: Immune-mediated inflammatory diseases (IMIDs) are a group of chronic and highly disabling diseases. The objective is to evaluate the satisfaction with the health care received by patients with the most prevalent IMIDs in Spain: inflammatory bowel disease (IBD), psoriasis (Ps) psoriatic arthritis (PsA), rheumatoid arthritis (RA) and spondyloarthropathies (SpAs), and to determine the factors that influence patient satisfaction. METHODS: This was an observational, cross-sectional, multicentre study in a real-world evidence context conducted in the Pharmacy Service in four hospital centres of the Community of Madrid that belong to the National Health System. The study included adult patients diagnosed with an IMID who had attended the Pharmacy Service at least three times. The patients were grouped according to the main IMID. Health care satisfaction was evaluated using the chronic patient experience assessment (IEXPAC) questionnaire. The responses to IEXPAC are grouped into three factors: productive interactions, new relational model and patient self-management, with a total score from 0 (worst) to 10 (best experience). Health-related quality of life (HRQoL) was also evaluated using the EQ-5D-5L questionnaire, and pharmacological adherence was evaluated through the Morisky-Green test. RESULTS AND DISCUSSION: A total of 578 patients were analysed (IBD = 25.3%; Ps = 19.7%; SpAs = 18.7%; RA = 18.5%; PsA = 17.8%). The mean age (SD) was 49.8 (12.3) years and 50.7% were male. The average score (SD) for the total IEXPAC sample was 6.6 (1.9). RA was the IMID with the lowest score, at 5.83 (2.0), significantly lower than the scores of Ps (SD) [7.01 (1.7); p = 0.003], IBD [6.83 (1, 9); p = 0.012] and SpAs [6.80 (1.6); p = 0.001]. Productive interactions (SD) [8.5 (1.8)] and patient self-management (SD) [7.3 (2.3)] were the factors with the highest scores, and the new relational model had the lowest score (SD) [3.2 (2.7)]. Male gender, a longer time interval between medication administrations and a higher HRQoL were correlated with better patient satisfaction. Current biological therapy (according to the Anatomical Chemical classification system) also had a significant influence; patients treated with tumour necrosis factor inhibitors and interleukin inhibitors showed greater satisfaction than those treated with selective immunosuppressants. WHAT IS NEW AND CONCLUSION: The IEXPAC results show high general satisfaction with care quality reported by patients with IMIDs treated in the Pharmacy Service. However, there are areas of improvement in care quality specially health professional-patient communication, such as increasing access to information, and promoting and facilitating relationships with patients in similar conditions.

Clinical course of severe patients with COVID-19 treated with tocilizumab: report from a cohort study in Spain.

Background: We report the long-term outcomes, changes in laboratory parameters, the incidence of secondary nosocomial infections and treatment cost of a Spanish cohort of patients with severe COVID-19 that received tocilizumab (TCZ).Methods: Retrospective cohort of PCR confirmed adult patients who received TCZ from March 1 to 24, 2020 in a tertiary hospital was analyzed. Patients were followed up until 10 May 2020.Results: We included 162 patients (median age 64 years; 70.4% male). At time of TCZ administration, 48.1% of patients were on invasive mechanical ventilation (IMV). Over a median follow-up of 53 days, 46.9% of patients were discharge in good conditions and 19.8% were still hospitalized. The overall mortality was 33.3%, being higher in patients on IMV than those who did not (46.2% vs 26.7%, P < 0.001). A significant improvement in the lymphocyte count, C-reactive protein, lactate dehydrogenase, and D-dimer was observed. Overall, 43.2% patients presented nosocomial infections, causing death in 8%. Infections were more prevalent in ICU units (63.0% vs 17.1%, P < 0.001). The total cost of TCZ was €371,784.Conclusions: Among the patients who used TCZ, one third died, regardless the improvement in some inflammatory biomarkers. The incidence of secondary nosocomial infections was high.

Effectiveness and Safety of Ombitasvir-Paritaprevir/Ritonavir and Dasabuvir With or Without Ribavirin for HCV Genotype 1 Infection for 12 Weeks Under Routine Clinical Practice.

BACKGROUND: No previous studies exist examining the effectiveness and safety in real clinical practice of the combination of ombitasvir/paritaprevir/ritonavir and dasabuvir (OBV/PTV/r+DSV). OBJECTIVE: To evaluate the effectiveness and safety in real clinical practice of the combination of OBV/PTV/r+DSV with or without ribavirin for 12 weeks in treatment-naïve and previously treated adult patients with chronic hepatitis C virus (HCV) genotype 1 infection. METHODS: This was an observational study of a prospective cohort of treatment-naïve and pretreated adult patients who received 12 weeks of OBV/PTV/r (25/150/100 mg once daily) and DSV (250 mg twice daily) with or without ribavirin. The primary effectiveness outcome was sustained virological response 12 weeks after the end of treatment (SVR12). Safety outcomes were presented by the incidence of adverse events. RESULTS: A total of 116 of 121 patients achieved a SVR12 (95.9%, 95% CI = 90.6-98.6). The SVR12 rate was 93.8% (95% CI = 86.0-97.9) in cirrhotic patients and 100% (95% CI = 91.4-100.0) in noncirrhotic patients. Adverse events occurred in 91.7% of patients, of which 81.8% were grade 1/2, and none led to premature discontinuation. Grade 3 adverse events were reported in 9.9% of patients. The most frequent adverse event was anemia (52.1%), although only 1.6% had a hemoglobin level below 8 g/dL. The incidence of any adverse event was higher in the group of patients who received ribavirin (96.5% vs 80.0%, P = 0.002). CONCLUSIONS: The combination of OBV/PTV/r+DSV with or without ribavirin for 12-week settings achieved a high rate of SVR12, with an acceptable safety profile in routine clinical care.

La tierra de Fuller, «desterrada» en las intoxicaciones por herbicidas / Fuller's earth, «banished» from herbicide poisoning

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Encuestas de satisfacción al personal facultativo y de enfermería como método de mejora de la calidad de los procesos del servicio de farmacia / Questionnaires on medical and nursing staff satisfaction as a method of improving

Objetivo: Describir los resultados de una encuesta de satisfacción dirigida al personal facultativo y de enfermería como método de mejora de la calidad de los procesos, de acuerdo con la norma ISO 9001:2000. Método: Estudio transversal mediante cuestionario autoadministrado. Se calculó un tamaño muestral de 405 para enfermería y 337 para los facultativos, asumiendo un porcentaje general de satisfacción del 80%, con una precisión del 3,5% y un riesgo alfa de 0,05. Resultados: La tasa de respuesta fue del 46,4% entre el personal de enfermería y del 24,3% entre los facultativos. La satisfacción general fue favorable para el 80,3% de enfermería y para el 96,3% de los facultativos. El ítem mejor valorado por ambos grupos fue la amabilidad del farmacéutico. Lo peor valorado por enfermería fue el cumplimiento del horario pactado para dispensar los pedidos y por los facultativos, el horario de dispensación de la farmacia. Conclusiones: La satisfacción percibida por enfermería y facultativos es una de las fuentes de información útil para establecer acciones de mejora dentro de la acreditación según la norma ISO 9001:2000

Objective: To report the results of a survey directed at medical and nursing staff as a method of improving the quality of procedures, in accordance with standard ISO 9001:2000. Method: Cross-sectional study using a self-administered questionnaire. A sample size of 405 was calculated as 405, for nurses and 337 for medical staff, assuming an overall percentage of satisfaction of 80%, with a precision of 3.5% and an alpha risk of 0.05. Results: The response rate was 46.4% for nursing staff and 24.3% for medical personnel. The overall satisfaction was favourable in 80.3% of nurses and 96.3% of doctors. The best valued item by both groups was the friendliness of the pharmacist. The worst valued by nursing staff, was the compliance to the agreed opening times for dispensing orders, and for doctors, the pharmacy opening times. Conclusions: The perceived satisfaction by nursing and medical staff is one of the most useful sources of information for establi-shing improvement processes for accreditation in accordance with ISO 9001:2000

[Not Available]. / Encuestas de satisfacción al personal facultativo y de enfermería como método de mejora de la calidad de los procesos del servicio de farmacia.

OBJECTIVE: To report the results of a survey directed at medical and nursing staff as a method of improving the quality of procedures, in accordance with standard ISO 9001:2000. METHOD: Cross-sectional study using a self-administered questionnaire. A sample size of 405 was calculated as 405, for nurses and 337 for medical staff, assuming an overall percentage of satisfaction of 80%, with a precision of 3.5% and an alpha risk of 0.05. RESULTS: The response rate was 46.4% for nursing staff and 24.3% for medical personnel. The overall satisfaction was favourable in 80.3% of nurses and 96.3% of doctors. The best valued item by both groups was the friendliness of the pharmacist. The worst valued by nursing staff, was the compliance to the agreed opening times for dispensing orders, and for doctors, the pharmacy opening times. CONCLUSIONS: The perceived satisfaction by nursing and medical staff is one of the most useful sources of information for establishing improvement processes for accreditation in accordance with ISO 9001:2000.