Multi-disciplinary insights from the First European Forum on Visceral Myopathy 2022 Meeting

Visceral myopathy is a rare, life-threatening disease linked to identified genetic mutations in 60% of cases. Mostly due to the dearth of knowledge regarding its pathogenesis, effective treatments are lacking. The disease is most commonly diagnosed in children with recurrent or persistent disabling episodes of functional intestinal obstruction, which can be life threatening, often requiring long-term parenteral or specialized enteral nutritional support. Although these interventions are undisputedly life-saving as they allow affected individuals to avoid malnutrition and related complications, they also seriously compromise their quality of life and can carry the risk of sepsis and thrombosis. Animal models for visceral myopathy, which could be crucial for advancing the scientific knowledge of this condition, are scarce. Clearly, a collaborative network is needed to develop research plans to clarify genotype–phenotype correlations and unravel molecular mechanisms to provide targeted therapeutic strategies. This paper represents a summary report of the first ‘European Forum on Visceral Myopathy’. This forum was attended by an international interdisciplinary working group that met to better understand visceral myopathy and foster interaction among scientists actively involved in the field and clinicians who specialize in care of people with visceral myopathy

Tempi di attesa: un approccio innovativo di gestione dell'accoglienza all'interno dell'Azienda Ospedaliera di Desio e Vimercate

La lunghezza dei tempi di attesa e la connessa selezione della domanda sanitaria limitano la garanzia dell’equità di accesso, la fruizione dei livelli essenziali e uniformi di assistenza, gli standard di qualità tecnico-professionale e di qualità percepita e costituiscono pertanto un evento fortemente critico per il Servizio Sanitario. La problematicità che ne consegue ha giustificato negli ultimi anni, diversi tentativi di gestione dei tempi di accoglienza volti a identificare soluzioni che assicurino un pronto accesso alle prestazioni per i pazienti aumentandone l’equità, la correttezza, l’appropriatezza e l’efficienza. L’approccio di gestione del servizio di accoglienza CUP implementato dall’Azienda Ospedaliera di Desio e Vimercate mediante un’analisi dei dati di accoglienza e di erogazione dei servizi dopo una razionalizzazione del punto di offerta, si inserisce all’interno di questo filone di sperimentazioni, costituendo un caso emblematico per gli esiti ottenuti in termini di gestione dei tempi d’attesa, impiego delle risorse specialistiche e qualità complessiva delle prestazioni.The length of waiting times and the related selection of the healthcare demand, are a limit in terms of equity of access to essential and uniform levels of care, of technical and professional quality standards and of perceived quality. For these reasons they are highly critical for the Health Service. In recent years, several attempts to manage reception times were made to identify solutions to ensure access to Health Services by increasing their equity, appropriateness and efficiency. The management of the Care Booking Centre (CUP) of the Hospital of Desio and Vimercate, through an analysis of the services delivered, represents an emblematic case considering the outcomes obtained in terms of management of waiting times, use of specialised resources and overall quality of Health Services provided