The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET.

During the COVID-19 pandemic, the need to provide high-level care for a large number of patients with COVID-19 has affected resourcing for, and limited the routine care of, all other conditions. The impact of this health emergency is particularly relevant in the rare connective tissue diseases (rCTDs) communities, as discussed in this Perspective article by the multi-stakeholder European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET). The clinical, organizational and health economic challenges faced by health-care providers, institutions, patients and their families during the SARS-CoV-2 outbreak have demonstrated the importance of ensuring continuity of care in the management of rCTDs, including adequate diagnostics and monitoring protocols, and highlighted the need for a structured emergency strategy. The vulnerability of patients with rCTDs needs to be taken into account when planning future health policies, in preparation for not only the post-COVID era, but also any possible new health emergencies.

RarERN Path: a methodology towards the optimisation of patients' care pathways in rare and complex diseases developed within the European Reference Networks.

BACKGROUND: In 2017, the European Commission has launched the European Reference Networks (ERNs), virtual networks involving healthcare providers across Europe. The aim of the ERNs is to tackle complex and rare diseases and conditions that require highly specialized treatment and a concentration of knowledge and resources. The ERN on rare and complex connective tissue and musculoskeletal diseases (ERN ReCONNET) is one of the 24 ERNs approved that aims to improve the management of Rare and Complex Connective Tissue and Musculoskeletal Diseases. OBJECTIVE: The RarERN Path methodology aims to create a single reference organisational model for patients' care pathways which, if applied in different contexts, helps to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases. METHODS: Starting from existing standard methods for the creation and elaboration of patients' care pathways, a specific methodology was created in order to take advantage of the distinctive and peculiar characteristics of the ERNs. Specifically, the development of the RarERN Path methodology involved different stakeholders: health economists, clinicians and researchers expert in rare and complex diseases, communication experts, experts in patients' involvement and narrative medicine and policy-makers. RESULTS: The RarERN Path methodology foresees six consecutive phases, each with different and specific aims. Specifically, the six phases are represented by: Phase 1-mapping of existing patients' care pathways and patients' stories; Phase 2-design of an optimised common patients' care pathway; Phase 3-consensus on an optimised common patients' care pathway; Phase 4-key performance indicators definition; Phase 5-refinement; Phase 6-pilot phase (optional). CONCLUSION: The application of RarERN Path to the different disease-specific and geographical contexts would help to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases across Europe as well as a possible tangible action towards the integration of ERNs into the different European healthcare systems.

A study of the prevalence of adverse events in primary healthcare in Spain.

BACKGROUND: Healthcare practices involve risks for patients, but there has been little research to date on the occurrence of adverse events (AE) in primary care (PC). The frequency of AE in PC in Spain, the factors that contribute to their occurrence, their severity and their preventability, were analysed. METHODS: Observational cross-sectional study was carried out in 48 PC centres in 16 regions of Spain. PC professionals were asked to assess whether the AE was caused by the healthcare or if it was an expectable consequence of the patient's underlying condition. A total of 452 healthcare professionals who attended 96 047 consultations were involved. RESULTS: A total of 773 AE were identified, so that the point prevalence of AE was 0.8% [95% confidence interval (CI) 0.76-0.85]. A majority of AE (64.3%) were considered preventable and only 5.9% were severe, usually related to medication [odds ratio (OR) = 4.6; 95% CI 2.1-10.3]. The most frequent causal factor of the AE was associated with medication (adverse drug reactions and medication errors), but problems in communication and management were at the root of many of the AE. Nurses reported more preventable AE (OR = 1.9; 95% CI 1.2-2.8). CONCLUSION: In spite of an AE being less damaging in PC, large numbers of patients and professionals suffer their consequences each year. An awareness of the magnitude and impact of AE is the first step on the road to the cultural change necessary for achieving safer healthcare.

Proyecto Bacteriemia Zero. Reducción de bacteriemia provocada por catéteres venosos centrales (CVC) en las UCI de España(AU) / Bacteriemia Zero Project. Reduction of bacteriema provoked by central vascular catheters in Intensive Care Units in Spain

Presentación. España, país de demostración para reducir las bacteriemias por catéteres centrales. El Ministerio de Sanidad y Política Social (MSPS) a través de la Agencia de Calidad, en colaboración con la Alianza Mundial para la Seguridad del Paciente de la OMS, ha puesto en marcha un proyecto para la prevención de las infecciones relacionadas con los catéteres centrales en las Unidades de Cuidados Intensivos (UCI). Este proyecto se enmarca dentro de la Estrategia de Seguridad de Pacientes que el MSPS viene desarrollando desde el año 2005 que incluye como uno de sus objetivos prioritarios impulsar prácticas seguras en los centros sanitarios del Sistema Nacional de Salud (SNS). El proyecto, realizado en coordinación con las Comunidades Autónomas (CCAA) y liderado a nivel técnico por la Sociedad Española de Medicina Intensiva, Crítica y Unidades Coronarias (SEMICYUC), utiliza una estrategia multifactorial basada en la experiencia llevada a cabo en Michigan por el grupo liderado por el Dr. Peter Pronovost de la Universidad Johns Hopkins. La Alianza Mundial por la Seguridad del Paciente junto con el Quality Safety Research Group de la Universidad de Johns Hopkins promueven la aplicación de dicha estrategia de manera global con la intención de obtener resultados similares a los conseguidos en el Estado de Michigan. España ha sido el primer país en sumarse a dicha iniciativa por lo que ha sido designado por la OMS para ser país «demostración» en la reducción de infecciones relacionadas con los catéteres centrales en las unidades de cuidados intensivos (UCI)(AU)

IntroductionSpain, A Showcase Country for the reduction of bacteriemas caused by the use of central catheters The Health and Consumer Affairs Ministry by means of its Quality Control Agency in collaboration with the World Alliance for Patient Safety Programme, promoted by the World Health Organization (WHO), has initiated a project to prevent infections related with central catheters in intensive care units. This project forms part of the Strategy for Patient Safety which the Health and Consumer Affairs Ministry has been developing since 2005; this strategy includes as one of its main objectives to promote safe practices in the health care centers run by the National Health Service. This project, carried out in coordination with the Spanish Autonomous Communities and lead at the technical level by the Spanish Society of Intensive, Critical and Coronary Care Medicine, SEMICYUC, utilizes a multifaceted strategy based on the experiences carried out in Michigan by Dr. Peter Pronovost of John Hopkins University. The World Alliance for Patient Safety Programme together with John Hopkins University Quality & Safety Research Group promote the application of the aforementioned strategy on a world-wide scale in the hopes of obtaining results similar to those obtained in the State of Michigan. Spain is the first country to join in on this initiative and therefore the WHO has designated Spain a "show case country" in the reduction of infections related to central catheters in intensive care units(AU)