Managing chronic conditions: lessons learnt from a comparative analysis of seven years’ policies for chronic care patients in Italy

This policy paper aims to compare what policies are developed in Italy for the management of chronic patients in order to improve population health, quality of care and patient experience and reduce per-capita cost. The paper also aims to identify the key trends and evolutionary trajectories across the Country. Methodology: The analysis focuses on 10 Italian Regions and the time span of observation is 7 years (from 2014 to 2020). Data collection and analysis adopts mixed methods in order to have a more in-depth picture of the contextual factors, mechanisms and outcomes. It includes a desk research of the literature and documentary analysis; semi-structured interviews; a theory driven evaluation of 12 programmes identified at the regional level; and a Consensus Conference to discuss and validate the results with an Expert Panel Group. Conclusions: The paper firstly describes the main policies developed in Italy in the last seven years; secondly, it discusses six main trends and clusters them into three strategies: demand management strategies; strategies to improve the management of comorbid and frail patients; and strategies to improve the coordination between levels of care and the patient journey; thirdly, it discusses eight trends and evolutionary trajectories which are now emerging

The transition of patients with rare diseases between providers: the patient journey from the patient perspective

Background: Rare diseases are a group of more than 6000 disorders that on the whole may affect 30 million European Union citizens. Most rare diseases are of genetic origin, are often chronic and life-threatening. Patients living with rare diseases typically receive care from many providers and move frequently within health care settings, so high-quality transitional care is especially important for them, as well as for their family caregivers. Poor communications, incomplete transfer of information, inadequate education of health professionals, limited access to expertise services, and the absence of a single point person to ensure continuity of care all contribute to gaps in care during transitions. The research project focuses on four rare Lysosomal storage disease - LSDs (Pompe disease, Anderson-Fabry disease, Gaucher disease and Mucopolysaccharidosis type 1) featured by the availability of treatments that allow for a good quality of life for patients and aims to gather information on the real patient journey and on the health and social services used in order to analyse and identify the key conditions for improving the care management of rare and ultra-rare diseases (RD). Methods: We conducted a national survey, distributed to patients and caregivers from the 1st of June 2016 to the 7th of August 2016. Data were gathered through questionnaires disseminated online (through the patient associations' websites, Facebook pages and other online networks) or administered directly to patients through the patients' associations, to maintain the privacy and anonymity. The questionnaire consisted of 70 questions related to history and pattern of referrals to specialist, time to diagnosis, core medical tests, disciplines and specialists, time and type of treatment. The questionnaire was developed based on 16 in-depth interviews to patients sampled to cover the 4 LSDs, different ages and residence at the national level and further tested through the support of patients' associations. Data were analysed by descriptive and analytical statistics. Results: Of the survey participants, 177 patients provided evaluable data. The sample covered the national territory, was mainly composed of adult patients (average 40 age), who were diagnosed with rare LSDs 13 years ago. According to the survey patients living with rare LSD diseases visited an average of 2.4 centres before receiving an accurate diagnosis and the mean length of time from symptom onset to accurate diagnosis was around 7.3 years, however, there was a significant relationship between mean length of time for diagnosis and age (P >0.001), the mean length of time was reduced to 1.5 years for young patients (under 20 age), while was around 12 years for the older ones (over 65 age), indicating therefore the clear improvement in the diagnostic phase and in the access to reference centres. The analysis revealed the variability in tackling rarity and complexity, the wide number and specialization of professionals involved and the difficulty to provide integrated care pathways (ICPs) due to the lack of scalability and standardisation of care processes. Conclusion: The combination of rarity, complexity and lack of effective treatment creates huge obstacles to the provision of holistic care and in many cases significant medical, psychological and social needs remain unmet. Rare and ultra-rare disease challenge the most traditional care management models, indeed, people with a RD often need follow up care and support from different categories of health professionals, often from several different medical specialities, as well as by social workers and other social and local service providers which requires a level of coordination not easy to organise in most health care systems

COT tra indicazioni nazionali e declinazioni territoriali

Il tema delle Centrali Operative Territoriali (COT) appare quello più controverso sul piano definitorio rispetto alle altre innovazioni territoriali proposte dal PNRR e dal DM 77/22, con premesse alla progettazione delle COT tra loro molto diverse nei vari contesti regionali e aziendali. La ricerca persegue quindi l’obiettivo di approfondire le scelte che realtà aziendali con diverso background esperienziale stanno adottando per l’attivazione delle COT. Il capitolo verte sull’analisi di otto casi aziendali, da cui emerge eterogeneità di modello di servizio, funzioni e condizioni organizzative nelle esperienze di Centrali pre-pandemia, mentre nelle aziende che non avevano attivato Centrali pre-pandemia risultano in via di estensione le esperienze delle USCA. Laddove era già presente un’esperienza di Centrale è attualmente in corso una riprogettazione per adeguare le esperienze sviluppate alle previsioni normative, mentre in assenza di esperienza pregressa il tema della COT sembra essere l’ultimo dei «cantieri» di lavoro del PNRR attivati. In alcuni casi le aziende sanitarie attendono gli indirizzi regionali per avviare la progettazione, mentre in altri i tempi aziendali di progettazione sono più veloci di quelli regionali. La progettazione delle Centrali emerge come espressione dell’autonomia aziendale e della contingenza dei fabbisogni di integrazione della filiera, con un diverso atteggiamento rispetto ai processi di formulazione delle COT nei diversi contesti aziendali. Si osserva, inoltre, un uso inappropriato del termine Centrale, oltre che un tentativo di far convergere molteplici fabbisogni di integrazione sulla Centrale, minando la sua efficacia potenziale. La distribuzione delle COT tra livello aziendale e distrettuale, un doppio livello spesso presente nelle esperienze analizzate, dipende dalla gestione dei flussi di transizione e dalla messa in gerarchia della COT. Le USCA suggestionano la progettazione delle COT, che si sottolinea essere un servizio interno all’azienda, che spesso non agisce la presa in carico. La COT rappresenta infine un’occasione per rafforzare la committenza dell’azienda sugli erogatori

N-Glycans mutations rule oligomeric assembly and functional expression of P2X3 receptor for extracellular ATP

N-Glycosylation affects the function of ion channels at the level of multisubunit assembly, protein trafficking, ligand binding and channel opening. Like the majority of membrane proteins, ionotropic P2X receptors for extracellular ATP are glycosylated in their extracellular moiety. Here, we used site-directed mutagenesis to the four predicted N-glycosylation sites of P2X3 receptor (Asn139, Asn170, Asn194 and Asn290) and performed comparative analysis of the role of N-glycans on protein stability, plasma membrane delivery, trimer formation and inward currents. We have found that in transiently transfected HEK293 cells, Asn170 is apparently the most important site for receptor stability, since its mutation causes a primary loss in protein content and indirect failure in membrane expression, oligomeric association and inward current responses. Even stronger effects are obtained when mutating Thr172 in the same glycosylation consensus. Asn194 and Asn290 are the most dispensable, since even their simultaneous mutation does not affect any tested receptor feature. All double mutants containing Asn170 mutation or the Asn139/Asn290 double mutant are instead almost unable to assemble into a functional trimeric structure. The main emerging finding is that the inability to assemble into trimers might account for the impaired function in P2X3 mutants where residue Asn170 is replaced. These results improve our knowledge about the role of N-glycosylation in proper folding and oligomeric association of P2X3 recepto

Adopting Integrated Care Pathways in Non–Small-Cell Lung Cancer: From Theory to Practice

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¿Restitución familiar?

El presente trabajo emerge a partir del contacto realizado con Centros de Servicios Locales de Promoción y Protección de los Derechos de los niños de la ciudad de Mar del Plata. Acercamiento realizado a fin de describir el funcionamiento de dichos Centros, constituyendo uno de los objetivos específicos del grupo de investigación en psicología Jurídica, de la Facultad de Psicología de la UNMDP. Este Grupo se planteó como proyecto la Identificación de factores asociados a la reintervención en problemáticas asistenciales de jóvenes, a partir de las reformulación normativa, que da origen a la ley provincial 13.298, en el año 2005.Eje: Psicología jurídica-forense.Facultad de Psicologí

¿Restitución familiar?

El presente trabajo emerge a partir del contacto realizado con Centros de Servicios Locales de Promoción y Protección de los Derechos de los niños de la ciudad de Mar del Plata. Acercamiento realizado a fin de describir el funcionamiento de dichos Centros, constituyendo uno de los objetivos específicos del grupo de investigación en psicología Jurídica, de la Facultad de Psicología de la UNMDP. Este Grupo se planteó como proyecto la Identificación de factores asociados a la reintervención en problemáticas asistenciales de jóvenes, a partir de las reformulación normativa, que da origen a la ley provincial 13.298, en el año 2005.Eje: Psicología jurídica-forense.Facultad de Psicologí

Il PNRR e i sistemi sanitari regionali: modelli di governance e processi di change management

Il Capitolo si focalizza sul modo in cui, i diversi sistemi sanitari regionali (SSR), si sono occupati della gestione del PNRR, adottando una duplice prospettiva di indagine: i) da una parte si intende studiare il modello di governance scelto dai diversi SSR; ii) dall’altra è obiettivo del lavoro approfondire se i SSR hanno interpretato la gestione del PNRR esclusivamente come un programma di spesa o anche come un’opportunità per un’azione di change management. In particolare, il Capitolo analizza le attività di programmazione relative alle Case di Comunità (CdC), sia in termini di programmazione della spesa che la ri-progettazione dei modello di assistenza territoriale, attraverso la metodologia dei casi studio che sono i SSR di: Campania, Emilia Romagna, Lazio, Lombardia e Molise. Dalle analisi emerge la necessità di rafforzare i livelli regionali, in termini di numerosità e competenze. Il PNRR, sia nel programma di spesa che nella riforma dei servizi territoriali, comporta un incremento delle responsabilità e delle attività del livello regionale, necessario, da un lato, per programmare e realizzare gli investimenti e, dall’altro, per guidare un processo di trasformazione dei servizi e sviluppo delle competenze. In secondo luogo, il contributo suggerisce l’importanza di curare le interdipendenze fra il programma di spesa e il processo di change management mentre i SSR stanno realizzando i due interventi con gruppi di lavoro e tempistiche differenti. In questo caso sorge il rischio che gli investimenti su una singola CdC vengano programmati prima di averne definito la vocazione strategica e i servizi offerti e, di conseguenza, che tali investimenti risultino disfunzionali. Rischi che potrebbero essere mitigati promuovendo delle forme di coordinamento fra i gruppi di lavoro che stanno guidando i due interventi