Telehealth Feasibility, Interest, and Satisfaction of Patients with Multiple Sclerosis Living in the Veneto Region, Italy, During the COVID-19 Pandemic.

Introduction: Synchronous telehealth (ST) consists of the remote real-time delivery of health services. COVID-19 pandemic has pressed the use of ST and forced neurologists to deliver telehealth services. The aim of this study was to obtain the actual picture of ST accessibility/interest and to evaluate the user satisfaction in patients with multiple sclerosis (MS) during the COVID-19 pandemic. Methods: The study consisted of two phases. First, a hard-copy questionnaire ("Telehealth Identity Card" [TIC]), including only yes/no questions, filled in the presence of a neurologist, and investigating the technical/practical access and the willingness/interest of MS patients to the telehealth services, was obtained from 600 consecutive outpatients, with no time limit for answering. Second, a fully filled "Televisit Satisfaction Questionnaire" (TSQ) was obtained from 100 consecutive patients that underwent a televisit. Statistical analysis applied the t test for normally distributed variables and the Mann-Whitney U test for ordinal. Logistic univariate and multivariate regressions were applied to predict televisit availability on the base of demographic variables. Results: Statistical analysis was performed on 552/600 consecutive TIC (92%). Of them, 464/552 (84%) of the MS patients declared to possess the tools and to be interested in telehealth services. Compared with noninterested patients, they were younger (mean age: 44.0 vs. 49.8, p < 0.001) and with lower disability (mean Expanded Disability Status Scale: 2.5 vs. 3.3, p < 0.01). From TSQ, it emerged that 95% agree or strongly agree that televisit respected timelines, saved time and money, was conducted with respect to privacy, can be a useful tool for monitoring disease and therapy, and expressed their availability for further televisits. Discussion: A great majority of MS patients living in Padua Province were interested in telehealth. High satisfaction and the willingness for further televist were expressed. Telehealth services can help neurologists to manage the increasing number of MS patients and their complex therapeutic monitoring.

Survival does not differ by annual center transplant volume-A Pediatric Heart Transplant Society Registry study.

BACKGROUND: There are conflicting data regarding the relationship between center volume and outcomes in pediatric heart transplantation. Previous studies have not fully accounted for differences in case mix, particularly in high-risk congenital heart disease (CHD) groups. We aimed to evaluate the relationship between center volume and outcomes using the Pediatric Heart Transplant Society (PHTS) Registry and explore how case mix may affect outcomes. METHODS: A retrospective cohort study of all pediatric patients in the PHTS Registry who received a heart transplant from 2009 to 2018 was performed. Centers were divided into 5 groups based on average yearly transplant volume. The primary outcome was time to death or graft loss and outcomes were compared using Kaplan-Meier analysis. RESULTS: There were 4583 cases among 55 centers included. There was no difference in time to death or graft loss by center volume in the entire cohort (p = .75), in patients with CHD (p = .79) or in patients with cardiomyopathy (p = .23). There was also no difference in time to death or graft loss by center size in patients undergoing transplant after Norwood, Glenn or Fontan (log rank p = .17, p = .31, and p = .10 respectively). There was a statistically significant difference in outcomes by center size in the positive crossmatch group (p < .0001), though no discernible pattern related to high or low center volume. CONCLUSIONS: Outcomes are similar among transplant centers of all sizes, including for high-risk patient groups with CHD. Future work is needed to understand how patient-specific risk factors may vary among centers of various sizes and whether this influences patient outcomes.

Cardiovascular remodelling in response to exercise training in patients after the Fontan procedure: a pilot study.

BACKGROUND: The cardiovascular adaptations associated with structured exercise training in Fontan patients remain unknown. We hypothesised that short-term training causes cardiac remodelling and parallel improvement in maximal exercise capacity (VO2 max) in these patients. METHODS AND RESULTS: Five patients, median age 19.5 (17.6-21.3) years, with a history of Fontan operation meeting inclusion/exclusion criteria, participated in a 3-month training programme designed to improve endurance. Magnetic resonance images for assessment of cardiac function, fibrosis, cardiac output, and liver elastography to assess stiffness were obtained at baseline and after training. Maximal exercise capacity (VO2 max) and cardiac output Qc (effective pulmonary blood flow) at rest and during exercise were measured (C2H2 rebreathing) at the same interval. VO2 max increased from median (IQR) 27.2 (26-28.7) to 29.6 (28.5-32.2) ml/min/kg (p = 0.04). There was an improvement in cardiac output (Qc) during maximal exercise testing from median (IQR) 10.3 (10.1-12.3) to 12.3 (10.9-14.9) l/min, but this change was variable (p = 0.14). Improvement in VO2 max correlated with an increase in ventricular mass (r = 0.95, p = 0.01), and improvement in Quality-of-life inventory (PedsQL) Cardiac scale scores for patient-reported symptoms (r = 0.90, p = 0.03) and cognitive problems (r = 0.89, p = 0.04). The correlation between VO2 max and Qc showed a positive trend but was not significant (r = 0.8, p = 0.08). No adverse cardiac or liver adaptations were noted. CONCLUSION: Short-term training improved exercise capacity in this Fontan pilot without any adverse cardiac or liver adaptations. These results warrant further study in a larger population and over a longer duration of time. TRIAL REGISTRATION NUMBER: NCT03263312, Unique Protocol ID: STU 122016-037; Registration Date: 18 January, 2017.

Reducing donor acceptance practice variation - Learnings from a discussion forum.

PURPOSE: Although waitlist mortality is unacceptably high, nearly half of donor heart offers are rejected by pediatric heart transplant centers. The Advanced Cardiac Therapy Improving Outcome Network (ACTION) and Pediatric Heart Transplant Society (PHTS) convened a multi-institutional donor decision discussion forum (DDDF) aimed at assessing donor acceptance practices and reducing practice variation. METHODS: A 1-h-long virtual DDDF for providers across North America, the United Kingdom, and Brazil was held monthly. Each session typically included two case presentations posing a real-world donor decision challenge. Attendees were polled before the presenting center's decision was revealed. Group discussion followed, including a review of relevant literature and PHTS data. Metrics of participation, participant agreement with presenting center decisions, and impact on future decision-making were collected and analyzed. RESULTS: Over 2 years, 41 cases were discussed. Approximately 50 clinicians attended each call. Risk factors influencing decision-making included donor quality (10), size discrepancy (8), and COVID-19 (8). Donor characteristics influenced 63% of decisions, recipient factors 35%. Participants agreed with the decision made by the presenting center only 49% of the time. Post-presentation discussion resulted in 25% of participants changing their original decision. Survey conducted reported that 50% respondents changed their donor acceptance practices. CONCLUSION: DDDF identified significant variation in pediatric donor decision-making among centers. DDDF may be an effective format to reduce practice variation, provide education to decision-makers, and ultimately increase donor utilization.

Successful implementation of telehealth visits in the paediatric heart failure and heart transplant population.

The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) and Pediatric Heart Transplant Society (PHTS) convened a working group at the beginning of 2020 during the COVID-19 pandemic, with the aim of using telehealth as an alternative medium to provide quality care to a high-acuity paediatric population receiving advanced cardiac therapies. An algorithm was developed to determine appropriateness, educational handouts were developed for both patients and providers, and post-visit surveys were collected. Telehealth was found to be a viable modality for health care delivery in the paediatric heart failure and transplant population and has promising application in the continuity of follow-up, medication titration, and patient education/counselling domains.

Analysis of combined non-invasive respiratory support in the first six waves of the COVID-19 pandemic. Outcome according to the first respiratory support.

Introduction: COVID-19 can lead to acute respiratory failure (ARF) requiring admission to intensive care unit (ICU). This study analyzes COVID-19 patients admitted to the ICU, according to the initial respiratory support. Its main aim is to determine if the use of combination therapy: high-flow oxygen system with nasal cannula (HFNC) and non-invasive ventilation (NIV), is effective and safe in the treatment of these patients. Methods: Retrospective observational study with a prospective database. All COVID-19 patients, admitted to the ICU, between March 11, 2020, and February 12, 2022, and who required HFNC, NIV, or endotracheal intubation with invasive mechanical ventilation (ETI-IMV) were analyzed. HFNC failure was defined as therapeutic escalation to NIV, and NIV failure as the need for ETI-IMV or death in the ICU. The management of patients with non-invasive respiratory support included the use of combined therapy with different devices. The study period included the first six waves of the pandemic in Spain. Results: 424 patients were analyzed, of whom 12 (2.8%) received HFNC, 397 (93.7%) NIV and 15 (3.5%) ETI-IMV as first respiratory support. PaO2/FiO2 was 145 ± 30, 119 ± 26 and 117 ± 29 mmHg, respectively (p = 0.003). HFNC failed in 11 patients (91.7%), who then received NIV. Of the 408 patients treated with NIV, 353 (86.5%) received combination therapy with HFNC. In patients treated with NIV, there were 114 failures (27.9%). Only the value of SAPS II index (p = 0.001) and PaO2/FiO2 (p < 0.001) differed between the six analyzed waves, being the most altered values in the 3rd and 6th waves. Hospital mortality was 18.7%, not differing between the different waves (p = 0.713). Conclusions: Severe COVID-19 ARF can be effectively and safely treated with NIV combined with HFNC. The clinical characteristics of the patients did not change between the different waves, only showing a slight increase in severity in the 3rd and 6th waves, with no difference in the outcome.

Psicología De Emergencias En España: Análisis Actual, Normativa Y Proposición Reguladora / Psychology Of Emergencies In Spain: Current Analysis, Norms And Regulatory Proposal

La psicología de emergencias en España ha tenido desde finales de los años noventa hasta la actualidad un desarrollo exponencial como nueva disciplina profesional del psicólogo. La demanda de psicólogos por parte de la sociedad en incidentes con múltiples víctimas, desastres, atentados terroristas, accidentes de tráfico, suicidios, etc., ha sido una constante en estos años. Por ello, se ha desarrollado numerosa normativa en la que se contempla la importancia de prestar esta asistencia a las personas afectadas por situaciones que, por su alto impacto, pueden resultar potencialmente traumáticas. En el presente trabajo, se realiza una revisión histórica de la evolución de la psicología de emergencias, la sintomatología más común presentada como consecuencia de estas vivencias, el impacto que ha supuesto a nuestra sociedad estos acontecimientos en cuanto a personas afectadas y la necesidad de prestar asistencia psicológica tanto en situaciones de emergencia cotidiana como en grandes catástrofes. Todo ello, nos lleva a la conclusión de la importancia de trabajar hacia una regulación de la psicología de emergencias que garantice la cualificación formativa de los profesionales de la psicología que van a ejercer esta actividad, así como su incorporación e integración en el sistema público asistencial. (AU)

Emergency psychology in Spain has experienced exponential development as a new professional discipline of the psychologist in the last decades. Society has shown a permanent demand for psychologists in mass casualty incidents, disasters, terrorist attacks, traffic accidents, suicides, etc. Consequently, numerous regulations have been developed regarding assistance in these situations which, due to their high impact, could be potentially traumatic. In the present work we present a historical review of the evolution of emergency psychology, the most common symptoms presented as a consequence of these experiences, the impact that these events have had on society, the people affected, and the necessity to provide psychological assistance, both in everyday emergency situations and in major catastrophes. We highlight the importance of emergency psychology regulation to guarantee the training qualification of the psychology professionals who will carry out this activity, as well as their incorporation and integration in the public healthcare system. (AU)

Psicología De Emergencias En España: Delimitación Conceptual, Ámbitos De Actuación Y Propuesta De Un Sistema Asistencial / Psychology Of Emergencies In Spain: Conceptual Delimitation, Action Areas And Healthcare System Proposal

La psicología de emergencias es un ámbito de aplicación de la psicología bastante reciente, lo que implica que no haya en laactualidad un consenso unificado sobre esta disciplina, su delimitación conceptual o campo de actuación. Tampoco queda reflejada su incursión en los itinerarios curriculares elaborados en nuestro país a partir del Espacio Europeo de Educación Superior,ni en la estructura sanitaria o de protección civil de cara a que los psicólogos de emergencias puedan intervenir en las situaciones de crisis, emergencias o desastres que se producen. Partimos en este trabajo de esta dificultad en la vertebración de este ámbito disciplinar para realizar una propuesta de sistema de asistencia psicológica que contribuya a clarificar la labor ycompetencias de los distintos servicios psicológicos implicados en estas situaciones de manera que facilite un sistema coordinadode actuación. Pretendemos generar un debate profesional y académico que nos lleve a encontrar el consenso necesario que impulse la consolidación de este específico perfil profesional, así como el reconocimiento y regulación de la Psicología de Emergencias que contribuya a afianzarla como disciplina dentro de la Psicología que permita ofrecer a la sociedad una actuaciónprofesional de calidad y adaptada a los retos actuales y futuros. (AU)

Emergency psychology is a recent area of application for psychology, which means that there is currently no unified consensus onthis discipline, its conceptual delimitation, or its field of action. Also not delimited are the curricular itineraries adapted to the European Higher Education Area, in either the health or civil protection structure, in order for emergency psychologists to be able tointervene in crisis situations, emergencies, and disasters. In the present work, we offer a proposal for a system of psychologicalassistance that contributes to clarifying the work and competences of the different psychological services involved in these situations, in a way that facilitates a coordinated system of action. We intend to generate a professional and academic debate to leadus to reach the necessary consensus to make it possible to consolidate this specific professional profile, as well as to recognizeand regulate emergency psychology in order to strengthen it as a discipline of psychology that allows us to offer a professionalperformance of quality, adapted to current and future challenges. (AU)

Center Donor Refusal Rate Is Associated With Worse Outcomes After Listing in Pediatric Heart Transplantation.

BACKGROUND: Pediatric donor heart acceptability differs among transplant centers. However, the impact of center donor acceptance on waitlist and posttransplant outcomes has not been investigated. The aim of our study was to investigate associations between transplant center refusal rate (RR) and outcomes after listing. METHODS: Retrospective analysis was performed using United Network for Organ Sharing/Organ Procurement and Transplant Network pediatric (<18 y) heart transplant data from 2007 to 2017. Center RR was defined as the median number of refusals per listed patient. Associations between RR center quartile and waitlist time, waitlist removal for death or clinical deterioration, posttransplant survival, and survival after listing were investigated. RESULTS: There were 5552 listed patients in 59 centers who met inclusion criteria. The lowest quartile RR centers had a median RR of ≤1 per listed patient, and highest RR centers percentile had a median RR of ≥4. Highest RR centers had shorter time to first offer (19 versus 38 d; P < 0.001), with longer waitlist times (203 versus 145 d; P < 0.001), were more likely to remove patients from the waitlist due to death or deterioration (24.1% versus 14.6%; P < 0.001), less likely to transplant listed patients (63.1% versus 77.6%; P < 0.001), and had a lower likelihood of survival 1 year after listing (79.2% versus 91.6%; odds ratio, 1.6; 95% confidence interval, 1.2-2.0; P < 0.001) compared with low RR centers. CONCLUSIONS: Patients listed at high RR centers had worse survival from listing despite having shorter times to first offer.