45 research outputs found
Development and Initial Validation of a Questionnaire to Measure Health-Related Quality of Life of Adults with Common Variable Immune Deficiency: The CVID_QoL Questionnaire.
BACKGROUND:
Generic health status quality of life (QoL) instruments have been used in patients with common variable immune deficiency (CVID). However, by their nature, these tools may over- or underestimate the impact of diseases on an individual's QoL.
OBJECTIVE:
The objective of this study was to develop and validate a questionnaire to measure specific-health-related QoL for adults with CVID (CVID_QoL).
METHODS:
The 32-item content of the CVID_QoL questionnaire was developed using focus groups and individual patient interviews. Validation studies included 118 adults with CVID who completed Short Form-36, Saint George Respiratory Questionnaire, General Health Questionnaire-12, and EuroQol-5D questionnaire in a single session. Principal component and factor analysis solutions identified 3 scores to be similar in number and content for each solution. Validation of 3 factor scores was performed by construct validity. Reproducibility, reliability, convergent validity, and discriminant validity were evaluated. Matrices consisting of correlations between the 32 items in the CVID_QOL were calculated.
RESULTS:
Factor analysis identified 3 dimensions: emotional functioning (EF), relational functioning (RF), and gastrointestinal and skin symptoms (GSS). The instrument had good internal consistency (Cronbach's alpha, min. 0.74 for GSS, max. 0.84 for RF, n = 118) and high reproducibility (intraclass correlation coefficient, min. 0.79 for RF, max 0.90 for EF, n = 27). EF and RF scores showed good convergent validity correlating with conceptually similar dimensions of other study scales. Acute and relapsing infections had a significant impact on EF and RF.
CONCLUSIONS:
This study provides evidence of the reliability and construct validity of the CVID_QoL to identify QoL issues in patients with CVID that may not be addressed by generic instruments
Haemato-oncology and burnout: an Italian survey
This cross-sectional survey aimed to evaluate the prevalence of burnout and estimated psychiatric disorders among haemato-oncology healthcare professionals in Italy. The aspects of work that respondents perceive as stressful and satisfying have also been examined. The assessments were made using the Maslach Burnout Inventory (MBI), General Health Questionnaire and a study-specific questionnaire. Logistic regression models were applied to show associations between different sources of work-related stress and burnout. Three hundred and eighty-seven out of 440 (87.95%) returned their questionnaires. The scores on MBI subscales indicate a high level of emotional exhaustion in 32.2% of the physicians and 31.9% of the nurses; a high level of Depersonalisation in 29.8 and 23.6%, respectively; and a low level of personal accomplishment in 12.4 and 15.3% respectively. The estimated prevalence of psychiatric disorders was 36.4% in physicians and 28.8% in nurses. Statistical analysis confirmed age, sex, personal dissatisfaction, physical tiredness and working with demanding patients to be associated with burnout. In conclusion, haemato-oncology healthcare professionals report a level of burnout and estimated psychiatric morbidity comparable to other oncological areas. Knowledge of the mechanisms of burnout and preventing and dealing with them is therefore a fundamental requirement for the improvement of quality in health services and job satisfaction
Large-scale, prospective, observational studies in patients with psoriasis and psoriatic arthritis: A systematic and critical review
<p>Abstract</p> <p>Background</p> <p>Observational studies, if conducted appropriately, play an important role in the decision-making process providing invaluable information on effectiveness, patient-reported outcomes and costs in a real-world environment. We conducted a systematic review of large-scale, prospective, cohort studies with the aim of (a) summarising design characteristics, the interventions or aspects of the disease studied and the outcomes measured and (b) investigating methodological quality.</p> <p>Methods</p> <p>We included prospective, cohort studies which included at least 100 adults with psoriasis or psoriatic arthritis. Studies were identified through searches in electronic databases (Pubmed, Medline, Cochrane library, Centre for Reviews and Dissemination). Information on study characteristics were extracted and tabulated and quality assessment, using a checklist of 18 questions, was conducted.</p> <p>Results</p> <p>Thirty five papers covering 16 cohorts met the inclusion criteria. There were ten treatment-related studies, only two of which provided a comparison between treatments, and six non-treatment studies which examined a number of characteristics of the disease including mortality, morbidity, cost of illness and health-related quality of life. All studies included a clinical outcome measure and 11 included patient-reported outcomes, however only two studies reported information on patient utilities and two on costs. The quality of the assessed studies varied widely. Studies did well on a number of quality assessment questions including having clear objectives, documenting selection criteria, providing a representative sample, defining interventions/characteristics under study, defining and using appropriate outcomes, describing results clearly and using appropriate statistical tests. The quality assessment criteria least adhered to involved questions regarding sample size calculations, describing potential selection bias, defining and adjusting for confounders and losses to follow-up, and defining and describing a comparison group.</p> <p>Conclusion</p> <p>The review highlights the need for well designed prospective observational studies on the effectiveness, patient-reported outcomes and economic impact of treatment regimes for patients with psoriasis and psoriatic arthritis in a real-world environment.</p
Using a modified Delphi methodology to gain consensus on the use of dressings in chronic wounds management
Objective: Managing chronic wounds is associated with a burden to patients, caregivers, health services and society and there is a lack of clarity regarding the role of dressings in improving outcomes. This study aimed to provide understanding on a range of topics, including: the definition of chronicity in wounds, the burden of illness, clinical outcomes of reducing healing time and the impact of early interventions on clinical and economic outcomes and the role of matrix metalloproteinases (MMPs) in wound healing. Method: A systematic review of the literature was carried out on the role of dressings in diabetic foot ulcer (DFU), and venous leg ulcer (VLU) management strategies, their effectiveness, associated resource use/cost, and quality of life (QoL) impact on patients. From this evidence-base statements were written regarding chronicity in wounds, burden of illness, healing time, and the role of MMPs, early interventions and dressings. A modified Delphi methodology involving two iterations of email questionnaires followed by a face-to-face meeting was used to validate the statements, in order to arrive at a consensus for each. Clinical experts were selected, representing nurses, surgeons, podiatrists, academics, and policy experts. Results: In the first round, 38/47 statements reached or exceeded the consensus threshold of 80% and none were rejected. According to the protocol, any statement not confirmed or rejected had to be modified using the comments from participants and resubmitted. In the second round, 5/9 remaining statements were confirmed and none rejected, leaving 4 to discuss at the meeting. All final statements were confirmed with at least 80% consensus. Conclusion: This modified Delphi panel sought to gain clarity from clinical experts surrounding the use of dressings in the management of chronic wounds. A full consensus statement was developed to help clinicians and policy makers improve the management of patients with these conditions
Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe
Sulla cronologia delle mura di Cora
Il primo scavo stratigrafico sulle mura in opera poligonale di I maniera di Cora, ne fissa la cronologia entro i primi decenni del V sec. a.C.
Lo scavo evidenzia una frequentazione del sito dalla Media e Tarda Et à del Bronzo e un insediamento stabile con capanne e officine ceramiche dall'inizio dell'Età del Ferro
Massimo Pallottino - tre momenti nella vita di uno studioso: Veio, Pyrgi, Milano '55.
Al volume è allegato un DVD che illustra gli interventi di M. Pallottino a Portonaccio (Veio) e la ricostruzione tridimensionale del tempio A di Pyrgi con la relativa decorazione architettonica, a cura di M.P. Baglione
A Case-control Study on Family Dysfunction in Patients with Alopecia Areata, Psoriasis and Atopic Dermatitis
A Whale in a Vineyard: Palaeontological Preparation and Education During the ‘Brunella’ Project, a Large-Scale Conservation Effort Focused on a Pliocene Whale in Southern Tuscany, Italy
In 2007, a whale skeleton was found and excavated in Lower Pliocene sediments at Poggio alle Mura (southern Tuscany, central Italy). This partially complete skeleton is known by the nickname ‘Brunella’. The extracted blocks containing the fossil whale were deposited in a warehouse where they remained for nine years. A new project started in 2016 with the goal of (a) preparing and stabilising the whale bones, (b) studying its anatomy and relationships, and (c) developing educational activities to disseminate scientific information to local communities and tourists. In the years 2016–2019, the ‘Brunella’ Project gave rise to an unprecedented number of activities in terms of scientific and educational efforts. The skeleton was micro-excavated, stabilised and prepared for exhibition; primary and secondary schools as well as university students were involved in educational activities both at the preparation laboratory and in their classrooms. University students were involved in a field school on palaeontological preparation that was active for three years (1 week per year); local populations were
invited to visit the laboratory during special Open days where they were able to see palaeontologists working on the project,the whale and the palaeoecosystem in which it ended its life cycle; foreign tourists visited the laboratory and were involved
in guided tours; social media were extensively used to disseminate results and advertise opportunities to visit the laboratory; a national TV channel screened a documentary on the whale and the project, disseminating a wealth of scientific results to hundreds of thousands of people. This project represents a unicum in Italy and can be seen as a prototype standard of an ideal process directed at preserving an important palaeontological specimen and, at the same time, enhancing the awareness and enthusiasm of local citizens for their local geoheritage