Exploring disease perception in Behçet's syndrome: combining a quantitative and a qualitative study based on a narrative medicine approach.

Background: Behçet Syndrome (BS) has a significant psychological and social impact on patients, caregivers and families. The present study aims at exploring disease perception in BS patients, using both a co-designed survey and the narrative medicine (NM) approach.

Methods: An ad-hoc questionnaire was co-designed by clinicians expert in BS, BS patients and caregivers and BS adult patients were invited to answer the online questionnaires.

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.

A systematic literature review of existing tools used to assess medication adherence in connective tissue diseases: the state of the art for the future development of co-designed measurement tools.

Lack of medication adherence is frequent in chronic connective tissue diseases and is associated with poorer health outcomes, low quality of life and economic loss. This research is based on a systematic literature search and aims to identify the surveys and tools used for the assessment of medication adherence in patients with connective tissue diseases (CTDs) and in particular the tools co-designed with patients. A systematic literature review was performed in PubMed and Embase databases searching for studies concerning the application of surveys or tools designed for medication adherence assessment.

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.

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.