How Italy Tweeted about COVID-19: Detecting Reactions to the Pandemic from Social Media.

The COVID-19 pandemic required communities throughout the world to deal with unknown threats. Using Twitter data, this study aimed to detect reactions to the outbreak in Italy and to evaluate the relationship between measures derived from social media (SM) with both national epidemiological data and reports on the violations of the restrictions. The dynamics of time-series about tweets counts, emotions expressed, and themes discussed were evaluated using Italian posts regarding COVID-19 from 25 February to 4 May 2020. Considering 4,988,255 tweets, results highlight that emotions changed significantly over time with anger, disgust, fear, and sadness showing a downward trend, while joy, trust, anticipation, and surprise increased. The trend of emotions correlated significantly with national variation in confirmed cases and reports on the violations of restrictive measures. The study highlights the potential of using SM to assess emotional and behavioural reactions, delineating their possible contribution to the establishment of a decision management system during emergencies.

Expert opinion and patients' in-depth interviews on the impact of pulmonary complications in systemic sclerosis.

OBJECTIVE: To qualitatively explore the perceptions and opinions of experts dealing with systemic sclerosis (SSc) and patients with SSc on the impact of the disease and pulmonary complications on economic status, psycho-social wellbeing and the diagnostic and therapeutic journey, and to identify which strategies/interventions may be useful to address patients' and their family's needs. METHODS: An expert meeting was conducted using the NGT to discuss the consequences of pulmonary complications on the Italian SSc community. The direct experience of five patients with SSc and pulmonary complications was described through in-depth interviews conducted by psychologists. RESULTS: The experts' meeting and patients' in-depth interviews underline the complexity of SSc and the consequences of pulmonary involvement on patients' and caregivers' health-related quality of life, working ability, psychological wellbeing and social interactions. Panellists suggest that improved communication between physicians, associations and institutions could help protect the working status of patients with SSc. Granting patients disability benefits, providing access to part-time jobs and productivity-focused training could also help decrease the economic burden of the disease. A multidisciplinary approach is recommended to reduce treatment burden, together with the implementation of standard diagnostic and therapeutic paths and increased use of telemedicine via platforms that ensure secure health data sharing. Both patients and caregivers may benefit from psychological support. CONCLUSION: SSc and pulmonary fibrosis have profound consequences on patients' and caregivers' health-related quality of life, working ability, psychological wellbeing and social interactions. Some activities may help patients and families deal with these aspects of the disease.

Adherence to treatment in Behçet's syndrome: a multi-faceted issue.

OBJECTIVES: The aim of this study is to explore the adherence to treatment in patients with Behçet's syndrome (BS), to identify the diverse adherence profiles and their correlations. METHODS: A cross-sectional study among adult BS patients was conducted administering an ad-hoc questionnaire to BS patients with the aim of investigating several dimensions related to BS management, including attitudes towards treatment. A Latent Class Analysis (LCA) was performed to identify adherence profiles and associated characteristics were identified using logistic regression analysis. RESULTS: A total of 207 patients answered the survey and 180 of them declared to take medication for BS, thus representing the study population. More than a third of the respondents have declared that they have skipped treatments before and autonomously modified (reduced or increased) the dosage of the treatment without medical consultation. LCA analysis allowed the identification of two distinct profiles, one more stick with recommended medication and the other less adherent to treatment. The less-adherent BS patient profile seems to be related with being in the third decade of life, being diagnosed with BS for more than 5 years and perceiving greater psychological impact of the disease. CONCLUSIONS: Addressing adherence in BS is not only related to measuring treatment adherence and identifying the barriers and the limitations; in fact, it should also encompass a wider approach that includes the awareness, the socio-psychological impact of the disease as well as patient education.

Cost-Effectiveness of Direct Non-Vitamin K Oral Anticoagulants Versus Vitamin K Antagonists for the Management of Patients with Non-Valvular Atrial Fibrillation Based on Available "Real-World" Evidence: The Italian National Health System Perspective.

BACKGROUND AND OBJECTIVE: The increasing availability of real-world evidence (RWE) about safety and effectiveness of direct non-vitamin K oral anticoagulants (DOACs) for the management of atrial fibrillation (AF) offers the opportunity to better understand the clinical and economic implications of DOACs versus vitamin K antagonists (VKAs). The objective of this study was to compare the economic implications of DOACs and VKAs using data from real-world evidence in patients with AF. METHODS: A Markov model simulating the lifetime course of patients diagnosed with non-valvular AF was used to evaluate the cost-effectiveness of DOACs (i.e., rivaroxaban, dabigatran and apixaban) versus VKAs from the Italian National Health System (INHS) perspective. The model was made up of data from the literature and a meta-analysis of RWE on the incidence of stroke/systemic embolism (SE), major bleeding (MB), intracranial haemorrhage (ICH) and all-cause mortality (ACM); direct costs included drug costs, costs for drug monitoring, and management of events from official national lists. One-way and probabilistic sensitivity analyses (PSA) were used to assess the robustness of the results. RESULTS: Results from the meta-analysis showed that apixaban had a high probability of being the most effective for stroke/SE, MB and ACM. Despite their higher acquisition costs, the cost-effectiveness analysis showed all DOACs involved a saving when compared with VKAs, with per-patient savings ranging between €4647 (rivaroxaban) to €6086 (apixaban). Moreover, all DOACs indicated a gain both in quality-adjusted life-years and life-years. According to PSA, findings related to apixaban were consistent, while for dabigatran and rivaroxaban PSA revealed a higher degree of uncertainty. CONCLUSIONS: The beneficial effect of DOACs on containing events showed in RWE had the potential to offset drug-related costs, thus improving the sustainability of treatment for non-valvular AF in daily clinical practice.

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.

One year in review 2020: economic and organisational aspects in rare and complex connective tissue diseases.

Rare and complex connective tissue diseases (rCTDs) encompass a considerable number of diseases and syndromes and their variability highly impacts on the clinical management, resulting in variable economic and organisational burden that might represent a challenge for healthcare systems. This paper is aimed at providing an overview of the most recent evidence regarding the economic and organisational impact of rCTDs. In particular, this work discusses the most relevant data on specific aspects related to health economics in rCTDs published in 2019.

Topic Modeling and User Network Analysis on Twitter during World Lupus Awareness Day.

Twitter is increasingly used by individuals and organizations to broadcast their feelings and practices, providing access to samples of spontaneously expressed opinions on all sorts of themes. Social media offers an additional source of data to unlock information supporting new insights disclosures, particularly for public health purposes. Systemic lupus erythematosus (SLE) is a complex, systemic autoimmune disease that remains a major challenge in therapeutic diagnostic and treatment management. When supporting patients with such a complex disease, sharing information through social media can play an important role in creating better healthcare services. This study explores the nature of topics posted by users and organizations on Twitter during world Lupus day to extract latent topics that occur in tweet texts and to identify what information is most commonly discussed among users. We identified online influencers and opinion leaders who discussed different topics. During this analysis, we found two different types of influencers that employed different narratives about the communities they belong to. Therefore, this study identifies hidden information for healthcare decision-makers and provides a detailed model of the implications for healthcare organizations to detect, understand, and define hidden content behind large collections of text.

Scoping review and bibliometric analysis of Big Data applications for Medication adherence: an explorative methodological study to enhance consistency in literature.

BACKGROUND: Medication adherence has been studied in different settings, with different approaches, and applying different methodologies. Nevertheless, our knowledge and efficacy are quite limited in terms of measuring and evaluating all the variables and components that affect the management of medication adherence regimes as a complex phenomenon. The study aim is mapping the state-of-the-art of medication adherence measurement and assessment methods applied in chronic conditions. Specifically, we are interested in what methods and assessment procedures are currently used to tackle medication adherence. We explore whether Big Data techniques are adopted to improve decision-making procedures regarding patients' adherence, and the possible role of digital technologies in supporting interventions for improving patient adherence and avoiding waste or harm. METHODS: A scoping literature review and bibliometric analysis were used. Arksey and O'Malley's framework was adopted to scope the review process, and a bibliometric analysis was applied to observe the evolution of the scientific literature and identify specific characteristics of the related knowledge domain. RESULTS: A total of 533 articles were retrieved from the Scopus academic database and selected for the bibliometric analysis. Sixty-one studies were identified and included in the final analysis. The Morisky medication adherence scale (36%) was the most frequently adopted baseline measurement tool, and cardiovascular/hypertension disease, the most investigated illness (38%). Heterogeneous findings emerged from the types of study design and the statistical methodologies used to assess and compare the results. CONCLUSIONS: Our findings reveal a lack of Big Data applications currently deployed to address or measure medication adherence in chronic conditions. Our study proposes a general framework to select the methods, measurements and the corpus of variables in which the treatment regime can be analyzed.

Rare diseases under different levels of economic analysis: current activities, challenges and perspectives.

Rare diseases imply clinical and economic burden as well as a significant challenge for health systems. One relevant objective of the activities planned within the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET) is to address the economic dimensions of rare diseases to identify, develop and suggest strategies to improve research and patients' access to orphan drugs (ODs) and highly specialised health technologies. This paper presents a preliminary review of the existing policies on rare diseases in the countries of the Network members. It also introduces and discusses the theme of how to perform health economic evaluations of rare diseases and of existing or new treatments for rare diseases. To obtain a preliminary overview aiming at defining the state of the art of rare diseases policies and initiatives in ERN ReCONNET countries, we collected and analysed the rare diseases national plans of all the eight countries of the ERN ReCONNET participants. The preliminary overview that has been performed showed that in all the ERN ReCONNET countries are in place national plans for rare diseases; however, heterogeneity exists in the reimbursement of ODs, direct provision by the healthcare system, involvement of patients' associations in decision making and implementation of clinical practice guidelines.