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Background The metabolic and psychological management of pediatric type 1 diabetes mellitus (T1DM) can be challenging over time given that T1DM may cause a negative emotional burden and, consequently, result in poor metabolic control of the disease. The objectives of this study are to translate the Problem Area in Diabetes Survey–Pediatric version (PAID-Peds) into Spanish, adapt it culturally and validate it. Methods A multicenter, observational, prospective and analytical study based on a sample of 636 patients aged 8–17 years, diagnosed with T1DM, under treatment with insulin and follow-up at the Miguel Servet University Hospital in Zaragoza (Aragón, Spain), the Ramón y Cajal University Clinical Hospital in Madrid (Spain) and at the Sant Joan de Déu Hospital in Barcelona (Catalonia, Spain) between 1 January 2023 and 31 December 2024. The study will consist of two phases: 1) Translation and cultural adaptation of the original PAID-Peds® survey into Spanish following eight steps; 2) Validation of the Spanish version of the PAIS-Peds® survey. The statistical analysis will be performed using Jamovi® 2.1.23, the reliability or internal consistency will be calculated using Cronbach’s alpha index (considering an index higher than 0.8 to be good) and the test-retest will be evaluated using the intraclass correlation coefficient. This study has been approved by the ethics and research committees at each center. Discussion Detecting the burden of having diabetes could favor early interventions to reduce anxiety and prevent the worsening of distress, exhaustion, and depressive symptoms, and subsequent poor diabetes control. Therapeutic education in diabetes—recommended by the WHO and the Diabetes Education Study Group—has shown encouraging results in glycemia and psychosocial and behavioral factors in T1DM.

Amyotrophy lateral sclerosis is a disease that causes disability, chronicity and physical handicap. Moreover, the dependence of the patient will increase. Objectives To assess the efficacy of specific interventions designed to train non-professional caregivers of patients diagnosed with amyotrophic lateral disease. Method Descriptive cross-sectional study of an intervention designed for non-professional caregivers of patients with ALS. Pilot study. The target audience of this study are non-professional caregivers of patients with ALS. The level of dependence of the patients is measured with the Barthel index, the Revised Scale of Functional Assessment of Amyotrophic Lateral Sclerosis and Cognitive Behavioural Screening in ALS. The needs of these patients’ caregivers were evaluated according to the Kreutzer questionnaire. A multidisciplinary intervention designed to modify this situation was designed and re-evaluated. Results Finally, seven caregivers were included in the pilot study. They were women, with an average age of 56 years, partners of the patients, with parallel economic activity and with an average level of education. The patients were men with a mean age of 63 years and 1-3 years of disease duration; they presented a moderate-mild Barthel, cognitive impairment, gross motility and respiratory function. The most demanded needs were for "medical / health information" and "involvement in treatment and care". Conclusion Specific interventions to meet the needs of non-professional caregivers are highly effective. Using tools that identify them contributes to improving caregivers' care.

Sickle cell disease (SCD) is a common hemoglobinopathy, secondary to alterations in the β globin chain, resulting in an abnormal hemoglobin variant named as hemoglobin S. These disorders show a wide phenotypical spectrum, and the prevalence of these disorders has significantly changed over the time because of multiple factors such as migration. We report a case of a 17-year-old black male, born in Gambia, diagnosed with sickle cell disease, who presented an associated mutation only described in a Japanese family (Oshima et al., 1996).

La esclerosis lateral amiotrófica (ELA) es una enfermedad que provoca incapacidad, cronicidad y minusvalía física. La dependencia del paciente se incrementa con el paso del tiempo hasta ser total. Objetivos Valorar la eficacia de intervenciones específicas diseñadas para capacitar a los cuidadores no profesionales de pacientes con enfermedad lateral amiotrófica. Método Estudio descriptivo transversal sobre una intervención diseñada para los cuidadores no profesionales de pacientes con ELA. Estudio piloto. Se evaluaron las necesidades de los cuidadores según el cuestionario de Kreutzer. Los pacientes se agruparon según el nivel de dependencia valorado con el índice de Barthel, y específicos de esclerosis lateral amiotrófica la Escala Revisada de Valoración Funcional y Cognitive Behavoral Screen. Se diseñó una intervención multidisciplinar y se evaluó su eficacia. Resultados Finalmente se incluyeron siete cuidadores en el estudio piloto. Son mujeres, de media de edad 56 años, parejas de los pacientes, con actividad económica paralela y con nivel medio de estudios. Los pacientes, son varones con una edad media de 63 años y de uno a tres años de evolución de la enfermedad; presentaron un Barthel moderado-leve, alteración cognitiva, de la motilidad gruesa y de la función respiratoria. Las necesidades más demandadas fueron las de «información médica/sanitaria» y de «implicación en el tratamiento y cuidado». Conclusiones Las intervenciones específicas para cubrir las necesidades de los cuidadores no profesionales son altamente efectivas. Utilizar herramientas que las identifiquen contribuyen a mejorar los cuidados que prestan. Amyotrophy lateral sclerosis is a disease that causes disability, chronicity and physical handicap. Moreover, the dependence of the patient will increase. Objectives To assess the efficacy of specific interventions designed to train non-professional caregivers of patients diagnosed with amyotrophic lateral disease. Method Descriptive cross-sectional study of an intervention designed for non-professional caregivers of patients with ALS. Pilot study. The target audience of this study are non-professional caregivers of patients with ALS. The level of dependence of the patients is measured with the Barthel index, the Revised Scale of Functional Assessment of Amyotrophic Lateral Sclerosis and Cognitive Behavioural Screening in ALS. The needs of these patients’ caregivers were evaluated according to the Kreutzer questionnaire. A multidisciplinary intervention designed to modify this situation was designed and reevaluated. Results Finally, seven caregivers were included in the pilot study. They were women, with an average age of 56 years, partners of the patients, with parallel economic activity and with an average level of education. The patients were men with a mean age of 63 years and 1-3 years of disease duration; they presented a moderate-mild Barthel, cognitive impairment, gross motility and respiratory function. The most demanded needs were for «medical/health information» and «involvement in treatment and care». Conclusion Specific interventions to meet the needs of non-professional caregivers are highly effective. Using tools that identify them contributes to improving caregivers’ care.

espanolObjetivo: conocer los niveles de ruido existentes en el Servicio de Urgencias (SU) de un hospital universitario e identificar las principales fuentes que lo generan. Metodo: estudio observacional descriptivo. Se realizaron mediciones del ruido en las distintas areas del SU del Hospital Universitario Sant Joan de Reus (Tarragona), entre abril y septiembre de 2016. Se utilizo un sonometro que registraba la actividad acustica en decibelios (dB9 en un software, para su posterior analisis e interpretacion). Se llevo a cabo analisis descriptivo con el programa estadistico SPSS version 23.0. Resultados: se realizaron 42 mediciones. La media (desviacion estandar o DE) de ruido en todas las areas del SU fue de 61,38 (4,90) dB. La media (DE) de ruido en las Urgencias de Pediatria fue 58,16 (4,09) dB, en las Urgencias Generales 63,91 (3,23) dB, en la sala de espera de adultos de 62,76 (6,92) dB, en el Area de Atencion Rapida de 57,43 (2,74) dB, en el Area de Observacion de 59,18 (5,67) dB. Conclusiones: los niveles de ruido medidos en el SU son altos y superan los limites recomendados por la Organizacion Mundial de la Salud (OMS). Se identificaron como principales fuentes generadoras de ruido la megafonia, las alarmas acusticas y en especial la comunicacion interpersonal, sobre todo durante los cambios de turno. EnglishObjective: to understand the noise levels existing at the Emergency Unit (ER) of a University Hospital, and to identify the main sources that generate it. Method: a descriptive observational study. Noise measurements were conducted in the different areas of the Emergency Unit of the Hospital Universitario Sant Joan de Reus (Tarragona), between April and September, 2016, using a sound level meter that recorded the acoustic activity in decibels (dB9 in software, for its subsequent analysis and interpretation). Descriptive analysis was conducted with the statistical program SPSS version 23.0. Results: forty-two (42) measurements were conducted. The mean (standard deviation or SD) noise in all areas of the Emergency Unit was 61.38 (4.90) dB. The mean (SD) noise in the Pediatric Emergency Unit was 58.16 (4.09) dB; and it was of 63.91 (3.23) dB in General Emergencies, 62.76 (6.92) dB in the Adult Waiting Room, 57.43 (2.74) dB in the Urgent Care Area, and 59.18 (5.67) dB in the Observation Area. Conclusions: the noise levels measured at the Emergency Unit are high and exceed the limits recommended by the World Health Organization (WHO). The main sources generating noise were identified as the loudspeaker system, the acoustic alarms, and particularly interpersonal communication, particularly during shift changes.

espanolObjetivo: valorar si la presencia de los progenitores disminuye el dolor y el estres de sus hijos e hijas durante la puncion venosa, y si su presencia durante el procedimiento disminuye su propia ansiedad. Metodo: ensayo clinico, controlado y aleatorizado con dos grupos de asignacion. Muestra de 150 ninos entre 1 mes y 14 anos a los que se les realizo una puncion venosa, 75 acompanados de sus progenitores (PP) y 75 con padres ausentes (PA). Se evaluo el dolor de los ninos mediante escalas de valoracion adaptadas a grupos de edad y el estres con la Escala de Groningen. La ansiedad de los progenitores se evaluo con el cuestionario de ansiedad STAI. Se realizo analisis comparativo de las tres variables en funcion del grupo de asignacion (media y desviacion estandar –DE–). Se llevo a cabo analisis multivariante mediante regresion lineal para valorar el efecto de la presencia de los progenitores sobre los niveles de dolor y estres de los ninos y ninas. Resultados: 150 sujetos de estudio (grupo PP n= 75 y grupo PA n= 75). La mediana de edad en el grupo PP fue de 3 anos y en el grupo de PA fue de 5 anos, presentando los grupos de asignacion diferencias estadisticamente significativas en relacion a la edad del nino/a (p La media de dolor en ninos/as del grupo PP fue de 4,8 (DE: 2,8) y del grupo PA fue de 3,8 (DE: 2,2). La media de estres en ninos/as del grupo PP fue de 2,9 (DE: 1,5) y del grupo PA fue de 2,2 (DE: 1,5), con diferencias estadisticamente significativas entre grupos de comparacion para dolor y estres (p 0,05). La edad y el exito en la venopuncion esta asociada al dolor y la edad se relaciono con la ansiedad del nino/a. Conclusiones: la ansiedad de los progenitores no se ve modificada en ningun grupo. El dolor y estres de los pequenos en el grupo de progenitores presentes es superior que en el grupo de progenitores ausentes, asumiendo que la edad de los ninos y ninas en el grupo de PP es menor que en el grupo de PA. La edad de los ninos y ninas y el exito de la venopuncion influye en el dolor y la edad es un condicionante del estres en los ninos y ninas sometidos a una venopuncion. EnglishObjective: to assess if the presence of parents reduces the pain and stress suffered by their sons and daughters during venous puncture, and if their presence during the procedure reduces their own anxiety. Method: a controlled and randomized clinical trial, with two assignment arms. A sample including 150 children from 1 month to 14 years of age, who underwent a venous puncture; 75 of them were accompanied by their parents (PP) and the parents of the other 75 were absent (AP). Pain in children was assessed through evaluation scales adapted to their age groups, and stress was measured with the Groningen Scale. The anxiety in parents was assessed with the STAI Anxiety Questionnaire. A comparative analysis of the three variables was conducted according to the assignment arm (mean and standard deviation (SD)). A multivariate analysis was conducted through linear regression in order to assess the effect of the presence of their parents on the pain and stress levels of the children. Results: the study included 150 patients (PP arm n= 75 and AP arm n= 75). The mean age in the PP group was 3 years, and 5 years in the AP arm; the assignment arms presented statistically significant differences according to the child’s age (p 0.05). Age and success in venous puncture is associated with pain, and age is associated with children’s anxiety. Conclusions: parents’ anxiety was not modified in any arm. Pain and stress in children from the arm with parents present were higher than in the arm with absent parents, assuming that the age of boys and girls in the PP arm was lower than in the AP arm. The age of boys and girls and the success in venous puncture has influence on pain, and age is a determining factor for stress in children undergoing venous puncture.

Pain is an issue that medicine considers of great importance. The treatment of pain and discomfort is essential during hospitalisation procedures, specially for newborn infants because, first, they are not able to communicate that they are in pain; and second large periods of pain or discomfort can lead to major issues. In order to assess the pain/discomfort suffered by patients, healthcare professionals use pain assessment scales: using physiologic parameters (e.g., heart beat, blood oxygen level, etc.) and observed behavioural parameters (e.g., cry, spasmodic movements, etc.) a value for pain is obtained. Current methods for pain assessment have some drawbacks, which could be overcome with the use of computerised systems. With this aim, we present a system that automatically analyses the pain or discomfort levels of newborns. The proposed system allows the remote monitoring of newborns and raises alarms upon specific conditions. Hence, caregivers (e.g., nurses and their assistants) can act accordingly to help relieving the pain. Moreover, the remotely monitoring is also useful for parents, since they cannot stay close to their babies hospitalised in neonate Intensive Care Units.