16 research outputs found

    The Italian registry of pulmonary non-tuberculous mycobacteria - IRENE:The study protocol

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    Background: A substantial increase in pulmonary and extra-pulmonary diseases due to non-tuberculous mycobacteria (NTM) has been documented worldwide, especially among subjects suffering from chronic respiratory diseases and immunocompromised patients. Many questions remain regarding the epidemiology of pulmonary disease due to NTM (NTM-PD) mainly because reporting of NTM-PD to health authorities is not mandated in several countries, including Italy. This manuscript describes the protocol of the first Italian registry of adult patients with respiratory infections caused by NTM (IRENE). Methods: IRENE is an observational, multicenter, prospective, cohort study enrolling consecutive adult patients with either a NTM respiratory isolate or those with NTM-PD. A total of 41 centers, including mainly pulmonary and infectious disease departments, joined the registry so far. Adult patients with all of the following are included in the registry: 1) at least one positive culture for any NTM species from any respiratory sample; 2) at least one positive culture for NTM isolated in the year prior the enrolment and/or prescribed NTM treatment in the year prior the enrolment; 3) given consent to inclusion in the study. No exclusion criteria are applied to the study. Patients are managed according to standard operating procedures implemented in each IRENE clinical center. An online case report form has been developed to collect patients' demographics, comorbidities, microbiological, laboratory, functional, radiological, clinical, treatment and outcome data at baseline and on an annual basis. An IRENE biobank has also been developed within the network and linked to the clinical data of the registry. Conclusions: IRENE has been developed to inform the clinical and scientific community on the current management of adult patients with NTM respiratory infections in Italy and acts as a national network to increase the disease's awareness

    Mapping adult literacy performance — support document

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    In 2010, the National Centre for Vocational Education Research (NCVER) conducted a preliminary study to determine the feasibility of mapping the performance levels of the international Adult Literacy and Life Skill Survey (ALLS) to those of the Australian Core Skills Framework (ACSF) using a Delphi technique (Circelli, Curtis, Perkins, 20111 ). In that study, a small number of adult literacy and numeracy experts used their professional judgement to qualitatively align a sample of ALLS items to the ACSF levels. At the completion of the study, there was general consensus among the participants that: • the mapping process was feasible for the: o Reading domain of the ACSF to the ALLS prose and document literacy domains; as well as the o Numeracy domains of the two frameworks. • a larger-scale research study should be undertaken to empirically align the two frameworks onto a single scale for each of the two domains (i.e., Reading and Numeracy). The National Centre for Vocational Education Research (NCVER) commissioned Victoria University (Shelley Gillis) in conjunction with Educational Measurement Solutions (Margaret Wu and Mar k Dulhunty) to undertake the larger-scale research study

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    OVeRcomING COPD: Virtual Reality and Savoring to Promote the Well-Being of Patients with Chronic Obstructive Pulmonary Disease

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    The Department of Psychology of the Catholic University of Milan has developed a relaxation VR-based intervention enhanced with savoring strategies in COPD patients in collaboration with Become-Hub and the Pulmonary Rehabilitation Unit of IRCCS INRCA (Italian National Research Centre on Aging) Casatenovo (LC). In particular, immersive experiences have been proposed to enhance attention shifting and distract patients from negative feelings (e.g., fatigue, dyspnea, and monotony) and to motivate them when exercising. The use of virtual natural scenarios to promote relaxation alongside pulmonary rehabilitation represents a promising alternative especially for hospitalized patients with chronic illnesses who can't move in natural outdoor environments. To verify the efficacy of the developed protocol, a randomized controlled trial will be conducted. Together with the traditional pulmonary rehabilitation, the experimental group will take part in the relaxation intervention integrated with VR scenarios of the augmented well-being protocol provided by the Italian VR company Become-Hub (https://en.discoverbecome.com), while the control group will listen to relaxing music. The intervention will last 2 weeks and will include four sessions, each lasting 20 minutes. In each session, participants of the experimental group will watch a relaxing virtual scenario integrated with a narrative voice and lasting about 10 minutes. For instance, in “the secret garden,” participants will be accompanied on a walk inside a Japanese garden on a sunny day. In “the beach at sunset,” the narrative voice will guide the participants on a walk along the beach until sunset arrives, while in “the waterfall in the prairie,” participants will encounter flowers, lakes, and waterfalls during a walk in the prairie

    Real-life evaluation of clinical outcomes in patients undergoing treatment for non-tuberculous mycobacteria lung disease: A ten-year cohort study

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    Outcome recognition is a crucial step in the management of non-tuberculous mycobacteria lung disease (NTM-LD). In order to explore NTM-LD outcomes in a real-life setting, an observational, retrospective study enrolling consecutive adults who received treatment for NTM-LD in Milan, Italy, from 2007 to 2017 was conducted. Among 170 patients (68.2% females; median age: 68 years), NTM-LD was mainly due to M. avium complex (MAC) (71.2%), M. kansasii (9.4%) and M. xenopi (7.1%). Along a median follow-up of 31 months, adverse events occurred in 37.6% of the patients. Treatment outcomes of the entire study population included an unsuccessful outcome in 35.3% of the patients, including treatment halted in 13.5%, recurrence in 11.2%, re-infection in 5.3%, treatment failure in 4.1% and relapse in 1.2%. The main reason for treatment halted was drug intolerance. No differences were detected between patients with MAC-LD vs. those with other NTM-LD in terms of unsuccessful outcome in general (35.5% vs. 34.7%). A significantly higher prevalence of patients who underwent treatment halted was found in patients with NTM-LD other than MAC in comparison to patients with MAC-LD (22.4% vs. 9.9%, p = 0.030). One third of adults undergoing treatment for a NTM-LD experiences an unsuccessful outcome with adverse events and treatment discontinuation being major challenges in patients' management
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