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

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

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

Auto-efficacia e qualit\ue0 di vita in pazienti con BPCO: risultati preliminari

La capacit\ue0 dell\u2019individuo di gestire efficacemente i comportamenti in ambito di salute \ue8 una variabile importante nei programmi di riabilitazione polmonare. La comprensione dei meccanismi di compromissione della Qualit\ue0 di Vita dovrebbe aiutare ad identificare gli obiettivi di riabilitazione polmonare. La ricerca ha mostrato correlazioni positive tra auto-efficacia e l'outcome riabilitativo in pazienti con BPCO. Questo studio ha cercato di valutare il ruolo relativo dell\u2019 auto-efficacia e delle variabili socio-demografiche nel predire la QdV in pazienti con BPCO. SOGGETTI: 103 ( 62 M, 41F, Et\ue0 media 70) con BPCO. STRUMENTI: Perceived Health Competence Scale (PHCS, 8 item, Smith, 1995); Airways Questionnaire 20 (AQ 20, Quick & Jones, 1994). RISULTATI: Autoefficacvia e et\ue0 predicono la qualit\ue0 di vita (R quadro corretto=0,27). I risultti incorggiano la riabilitazione polmonare (Moullec, 2011) con varie componenti, tra cui incontri psico-educativi e di self-management volti al potenziamento delle risorse positive dell\u2019individuo per favorire una migliore gestione della malattia e qualit\ue0 di vita

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

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