Peritoneal dialysis (PD) is performed as a home-based treatment and in this context, telemedicine has been proven helpful for improving clinicians' surveillance and maintaining PD patients in their home setting. The new e-health devices make remote patient monitoring (RPM) for automated peritoneal dialysis (APD) treatment possible, evaluating the data at the end of every treatment and adapting the prescription at distance if necessary. This paper aims to share a method for improving clinical surveillance and enabling PD patients to receive their treatment at home. In the present case series, we delineate the clinical protocol of the Vicenza PD Center regarding patient characteristics, timing, and the purpose of the APD-RPM. We present the Vicenza PD Center's experience, illustrating its application through three case reports as exemplars. Telemedicine helps to carefully allocate healthcare resources while removing the barriers to accessing care. However, there is a risk of data overload, as some data might not be analyzed because of an increased workload for healthcare professionals. A proactive physician's attitude towards the e-health system has to be supported by clinical instructions and legislative rules. International and national guidelines may suggest which patients should be candidates for RPM, which parameters should be monitored, and with what timing. According to our experience, we suggest that the care team should define a workflow that helps in formulating a correct approach to RPM, adequately utilizing resources. The workflow has to consider the different needs of patients, in order to assure frequent remote control for incident or unstable patients, while prevalent and stable patients can perform their home treatment more independently, helped by periodic and deferred clinical supervision.
Introduction: The intensification of the migration phenomenon led to a growing interest in the public domain about the attitudes towards foreigners. Xenophobia and xenophilia are two opposite orientations towards foreigners, that could be considered the consequences of the interaction between several factors. Based on the self-determination theory, this study aims to verify that a bright pathway composed by intrinsic goal, needs satisfaction and altruism could explain xenophilia, whereas a dark pathway composed by extrinsic goal, needs frustration, and egoism could explain xenophobia in a group of Italian emerging adult. Methods: A group of 306 Italian emerging adults (aged 18-24), completed questionnaires and structural equation modelling was used to test the hypothesized model. Results: The results showed a relation between intrinsic goals and needs satisfaction, conversely needs satisfaction was related to altruism, moreover altruism was related to xenophilia. On the other hand, extrinsic goals were related to need frustration; moreover, need frustration was related to egoism and egoism was related to xenophobia. Discussion: These results were discussed within the Italian context for a better general comprehension of both xenophobia and xenophilia in a SDT framework.
ABSTRACT Spinal muscular atrophy (SMA) has gained much attention in the last few years because of the approval of the first intrathecal treatment for this neurodegenerative disease. Latin America needs to develop the demographics of SMA, timely access to diagnosis, and appropriate following of the standards of care recommendations for patients. These are essential steps to guide health policies. Methods This was a descriptive study of a cohort of SMA patients from all over Chile. We analyzed the clinical, motor functional, and social data, as well as the care status of nutritional, respiratory and skeletal conditions. We also measured the SMN2 copy number in this population. Results We recruited 92 patients: 50 male; 23 SMA type-1, 36 SMA type-2 and 33 SMA type-3. The median age at genetic diagnosis was 5, 24 and 132 months. We evaluated the SMN2 copy number in 57 patients. The SMA type-1 patients were tracheostomized and fed by gastrostomy in a 69.6 % of cases, 65% of SMA type-2 patients received nocturnal noninvasive ventilation, and 37% of the whole cohort underwent scoliosis surgery. Conclusion Ventilatory care for SMA type-1 is still based mainly on tracheostomy. This Chilean cohort of SMA patients had timely access to genetic diagnosis, ventilatory assistance, nutritional support, and scoliosis surgery. In this series, SMA type-1 is underrepresented, probably due to restrictions in access to early diagnosis and the high and early mortality rate.
La Atrofia Muscular Espinal (AME) ha concitado mucha atención en los últimos 2 años debido a la aprobación del primer tratamiento intratecal para esta enfermedad neurodegenerativa. América Latina necesita desarrollar la demografía de AME, un acceso oportuno al diagnóstico y un seguimiento apropiado de los pacientes que incorporen los estándares de atención recomendados por expertos. Estos son pasos esenciales para orientar las futuras políticas de salud en esta enfermedad. Métodos Este es un estudio descriptivo de una cohorte de pacientes con AME de todo el país. Se analizaron los datos clínicos, motores, funcionales, sociales y el estado nutricional, respiratorio y esquelético de los pacientes. También medimos el número de copias del gen SMN2 en esta población. Resultados se reclutaron 92 pacientes, 50 varones; 23 AME tipo 1, 36 AME tipo 2 y 33 AME tipo 3. La edad media al diagnóstico genético fue de 5, 24 y 132 meses respectivamente. Evaluamos el número de copias de SMN2 en 57 pacientes. Un 69,6% de los pacientes con AME tipo 1 estaban traqueostomízados y gastrostomizados , un 65% de los pacientes con AME tipo 2 usaban ventilación nocturna no invasiva y el 37% de toda la cohorte presentaba una cirugía de escoliosis. Conclusión Esta cohorte chilena de pacientes con AME tuvo acceso oportuno al diagnóstico genético, asistencia ventilatoria, apoyo nutricional y cirugía de escoliosis, sin embargo, la atención ventilatoria para AME tipo 1 continúa aun basándose principalmente en la traqueostomía. En esta serie, AME tipo 1 está subrepresentada, probablemente debido a las restricciones en el acceso al diagnóstico temprano y la tasa de mortalidad alta y temprana.
Humans , Male , Female , Infant, Newborn , Infant , Child , Adolescent , Adult , Young Adult , Spinal Muscular Atrophies of Childhood/diagnosis , Neurodegenerative Diseases/diagnosis , Phenotype , Respiration, Artificial , Scoliosis/surgery , Socioeconomic Factors , Biopsy , Spinal Muscular Atrophies of Childhood/mortality , Spinal Muscular Atrophies of Childhood/therapy , Chile/epidemiology , Residence Characteristics , Prevalence , Cohort Studies , Neurodegenerative Diseases/mortality , Neurodegenerative Diseases/therapy , Genetic Predisposition to Disease , Electromyography , Genotype
Individual, social and situational factors might play an important role on the experience of anxiety during musical performances. The present research focused on the relationship between self-representations, including musical self, and performance anxiety among a sample of Italian professional and amateur musicians (N = 100; age, M = 23.40, 50% females). We predicted that higher self-discrepancies (actual vs. future self) would be associated with higher performance anxiety in a musical setting (vs. a non musical one), via musical self, and only in professional musicians. The results confirmed our hypothesis. Higher discrepancies between actual and future self-representations were positively associated with higher performance anxiety levels via the musical self only in participants who play instruments at a professional level. Furthermore, musical self influenced performance anxiety levels in a music related setting (i.e., a concert) but not in a non musical one (i.e., an exam).
