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. Cluster analysis was used to analyse data from the survey and to identify groups of patients with diverse disease perception. To further explore real-life perspectives, the stories of illness of a smaller group of adult BS patients were anonymously collected online and analysed by means of text, sentiment and qualitative analysis. RESULTS: Two hundred and seven patients answered the survey and forty-three stories were collected. The cluster analysis highlighted that accepting or not the disease has a strong impact on the daily life, on how BS patients perceive themselves and in terms of hope for the future. The stories revealed that patients often address common issues, such as the long and complex journey faced from the disease onset until the BS diagnosis, which was strongly connected to the concept of time and perceived as an exhausting period of their lives. CONCLUSION: To our knowledge, this is the first study that addressed disease perception also applying the NM principles in BS. The current perception that BS patients have of their disease should encourage the BS scientific and patient community in joining forces in order to improve the journey of BS patients.

Drug-eluting Microspheres Compared to Conventional Transarterial Chemoembolization as First Line Treatment for Unresectable Hepatocellular Carcinoma: A Single-center Retrospective Cost-utility Analysis.

PURPOSE: To assess the cost-utility of initial treatment with drug-eluting microspheres (DEM) transarterial chemoembolization (TACE) versus conventional (C)-TACE in patients with hepatocellular carcinoma considering the perspective of a Local Healthcare Authority in Italy. MATERIALS AND METHODS: The economic evaluation is based on a retrospective single-center study and individual patients' data whose details have been previously reported. The impact of initial treatment with DEM-TACE or C-TACE on disease progression, mortality, and direct health costs over a lifetime horizon were simulated and compared in terms of incremental cost-utility ratio expressed as costs per quality adjusted life years (QALY). Costs included direct health costs related to the first chemoembolization procedure and all subsequent follow-up costs associated with health care resources used for disease management. Probabilistic (PSA) sensitivity analysis was used to assess the robustness of the results. RESULTS: A total of 101 patients in each treatment group were considered. All over the time-horizon median costs were €3,145.14 and €2,158.32 in the DEM-TACE and C-TACE group, respectively (p < 0.001); while mean costs were € 24,619 and € 17,001, respectively (p < 0.001). The ICUR was 6,461.86 €/QALY when using median costs derived from the study population as input for the health-economic evaluation and 49,932.15 €/QALY when the mean costs were considered. Results from PSA highlighted that using median costs DEM-TACE was always cost-effective, while using mean costs, it was preferable only 24.7% of times. CONCLUSIONS: The higher prices of DEMs are counterbalanced by the positive impact on QALY.

Global burden of colorectal cancer in 2020 and 2040: incidence and mortality estimates from GLOBOCAN.

OBJECTIVE: Colorectal cancer (CRC) is the third most common cancer worldwide. The geographical and temporal burden of this cancer provides insights into risk factor prevalence and progress in cancer control strategies. We examine the current and future burden of CRC in 185 countries in 2020 and 2040. METHODS: Data on CRC cases and deaths were extracted from the GLOBOCAN database for the year 2020. Age-standardised incidence and mortality rates were calculated by sex, country, world region and Human Development Index (HDI) for 185 countries. Age-specific rates were also estimated. The predicted number of cases and deaths in 2040 were calculated based on global demographic projections by HDI. RESULTS: Over 1.9 million new CRC cases and 930 000 deaths were estimated in 2020. Incidence rates were highest in Australia/ New Zealand and European regions (40.6 per 100 000, males) and lowest in several African regions and Southern Asia (4.4 per 100 000, females). Similar patterns were observed for mortality rates, with the highest observed in Eastern Europe (20.2 per 100 000, males) and the lowest in Southern Asia (2.5 per 100 000, females). The burden of CRC is projected to increase to 3.2 million new cases and 1.6 million deaths by 2040 with most cases predicted to occur in high or very high HDI countries. CONCLUSIONS: CRC is a highly frequent cancer worldwide, and largely preventable through changes in modifiable risk factors, alongside the detection and removal of precancerous lesions. With increasing rates in transitioning countries and younger adults, there is a pressing need to better understand and act on findings to avert future cases and deaths from the disease.

Late chronotypes, late mealtimes. Chrononutrition and sleep habits during the COVID-19 lockdown in Italy.

The emerging field of chrononutrition provides useful information on how we manage food intake across the day. The COVID-19 emergency, and the corresponding restrictive measures, produced an unprecedented change in individual daily rhythms, possibly including the distribution of mealtimes. Designed as a cross-sectional study based on an online survey, this study aims to assess the chrononutrition profiles (Chrononutrition Profile Questionnaire, CP-Q) in a sample of 1298 Italian participants, during the first COVID-19 lockdown, and to explore the relationship with chronotype (reduced Morningness-Eveningness Questionnaire, rMEQ), sleep quality (Pittsburgh Sleep Quality Index, PSQI) and socio-demographics. Our findings confirm a change in eating habits for 58% of participants, in terms of mealtimes or content of meals. Being an evening chronotype and experiencing poor sleep imply a higher likelihood of changing eating habits, including a delay in the timing of meals. Also, under these unprecedented circumstances, we report that the timing of breakfast is a valuable proxy capable of estimating the chronotype. From a public health perspective, the adoption of this straightforward and low-cost proxy of chronotype might help in the early detection of vulnerable subgroups in the general population, eventually useful during prolonged stressful conditions, as the one caused by COVID-19 pandemic.

Neural Changes Induced by a Speech Motor Treatment in Childhood Apraxia of Speech: A Case Series.

We report a case series of children with childhood apraxia of speech, by describing behavioral and white matter microstructural changes following 2 different treatment approaches.Five children with childhood apraxia of speech were assigned to a motor speech treatment (PROMPT) and 5 to a language, nonspeech oral motor treatment. Speech assessment and brain MRI were performed pre- and post-treatment. The ventral (tongue/larynx) and dorsal (lips) corticobulbar tracts were reconstructed in each subject. Mean fractional anisotropy and mean diffusivity were extracted. The hand corticospinal tract was assessed as a control pathway. In both groups speech improvements paralleled changes in the left ventral corticobulbar tract fractional anisotropy. The PROMPT treated group also showed fractional anisotropy increase and mean diffusivity decrease in the left dorsal corticobulbar tract. No changes were detected in the hand tract. Our results may provide preliminary support to the possible neurobiologic effect of a multimodal speech motor treatment in childhood apraxia of speech.

The cost-effectiveness of transcatheter aortic valve implantation: exploring the Italian National Health System perspective and different patient risk groups.

OBJECTIVES: To assess the cost-effectiveness (CE) of transcatheter aortic valve implantation (TAVI) in Italy, considering patient groups with different surgical risk. METHODS: A Markov model with a 1-month cycle length, comprising eight different health states, defined by the New York Heart Association functional classes (NYHA I-IV), with and without stroke plus death, was used to estimate the CE of TAVI for intermediate-, high-risk and inoperable patients considering surgical aortic valve replacement or medical treatment as comparators according to the patient group. The Italian National Health System perspective and 15-year time horizon were considered. In the base-case analysis, effectiveness data were retrieved from published efficacy data and total direct costs (euros) were estimated from national tariffs. A scenario analysis considering a micro-costing approach to estimate procedural costs was also considered. The incremental cost-effectiveness ratio (ICER) was expressed both in terms of costs per life years gained (LYG) and costs per quality adjusted life years (QALY). All outcomes and costs were discounted at 3% per annum. Univariate and probabilistic sensitivity analyses (PSA) were performed to assess robustness of results. RESULTS: Over a 15-year time horizon, the higher acquisition costs for TAVI were partially offset in all risk groups because of its effectiveness and safety profile. ICERs were €8338/QALY, €11,209/QALY and €10,133/QALY, respectively, for intermediate-, high-risk and inoperable patients. ICER values were slightly higher in the scenario analysis. PSA suggested consistency of results. CONCLUSIONS: TAVI would be considered cost-effective at frequently cited willingness-to-pay thresholds; further studies could clarify the CE of TAVI in real-life scenarios.

Prostanoids in scleroderma microangiopathy: clinical and pharmacoeconomic comparison between two intravenous regimens.

Objectives: Intravenous iloprost (ILO) has widely demonstrated its effectiveness and safety in systemic sclerosis (SSc) patients. Unfortunately, there is no clear consent about dosage, duration, frequency, and infusion modality. The aim of this study was to compare two different therapeutic schemes in the same cohort of consecutive SSc subjects, evaluating differences in terms of effectiveness [digital ulcer (DU) outcome], safety, and direct healthcare costs.Method: This was a retrospective observational study of 47 patients classified with SSc treated with intravenous ILO for severe Raynaud's phenomenon and/or DUs. Two regimens were compared: a continuous inpatient scheme and a daily outpatient scheme. Demographics and clinical data, concomitant therapies, adverse events, and data on resource use and costs were collected.Results: The number of DUs rose slightly with the switch from the continuous to the daily scheme (0.61 ± 1.2 vs 1.1 ± 1.7). Moreover, in the daily scheme there was an increase in the number of therapeutic cycles (2.4 ± 0.7 vs 4.71 ± 1.4, p < 0.001) and an increase in patients treated with other vasoactive drugs. There was a reduction in ILO tolerability and more than half of the patients suspended the treatment. Five patients required hospitalization for severe and refractory DUs in the daily scheme. Moreover, the costs of the two treatments were comparable [median 7174 (range 2748-18 524) EUR vs 6284 (3232-22 706) EUR, p = 0.712].Conclusion: Treatment with a daily scheme of ILO is characterized by worse tolerability and a higher dropout rate compared to a low-flow regimen, with similar costs. We suggest that a low-flow continuous therapeutic scheme is preferable in SSc patients.

Translation, cultural adaptation and validation of the Systemic Lupus Erythematosus Activity Questionnaire (SLAQ) in a cohort of Italian systemic lupus erythematosus patients.

Introduction The Systemic Lupus Erythematosus Activity Questionnaire (SLAQ) is a patient-reported instrument for the assessment of disease activity in systemic lupus erythematosus (SLE). The aims of the present study are translation, cultural adaptation and validation of an Italian version: the SLAQit. Methods The process of translation and cultural adaptation followed published guidelines. SLAQit was pretested in a group of 35 SLE patients to evaluate acceptability, comprehension and feasibility. Internal consistency, test-retest validity and external validity were tested on consecutive SLE patients attending the clinic. Results In total, 135 SLE patients were enrolled in this study. The pilot test provided a 99.9% response rate and demonstrated feasibility and comprehensibility of the questionnaire. A good internal consistency was found among the three components of the score (SLAQ score, numerical rating scale (NRS), patient global assessment question (PGA); α = 0.79). SLAQit showed very high reliability (test-retest α > 0.8). NRS and PGA showed a strong positive correlation with both Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) ( p = 0.002 and p < 0.001, respectively) and European Consensus Lupus Measurement (ECLAM) scores ( p = 0.01 and p < 0.001, respectively), while the SLAQ score did not. A significant agreement was observed between the physician's intention to treat and both the NRS and PGA scores, while no significant association was reported with the SLAQ score. Conclusions SLAQit was demonstrated to be a reliable and valid instrument for self-assessment of disease activity in SLE patients.

[Anorexia nervosa and hyperactivity in adolescence: psychiatric and internal medicine features]. / Anoressia nervosa e iperattività in adolescenza: correlati psichiatrici e internistici.

AIM: The aim of the present study was to verify the influence of hyperactivity on internistic and psychiatric parameters in early onset anorexia nervosa restricting type (ANR). METHODS: Seventy-three adolescent females (mean age 13.5 years, SD: 2.27) with a diagnosis of ANR (DSM-IV-TR) were consecutively enrolled in the Child and Adolescent Eating Disorders Unit of the IRCCS-Stella Maris and assessed by an extensive clinical protocol. All patients completed: psychiatric evaluation for description of the DCA and comorbidities; pediatric assessment including complete auxological data, blood pressure, heart rate and other electro/echo cardiographic and biohumoral parameters. The hyperactivity was estimated by the application of the "Structured Interview for Anorexic and Bulimic Disorder-Expert Form" (Item 40) in the context of clinical observation. Subjects were identified according to their level of hyperactive (ANR+H) and non-hyperactive (ANR-H) activity. RESULTS: In the ANR+H group heart rate, leptin, sodium, potassium and gamma plasma proteins significantly differ compared to the group ANR-H. Patients with hyperactivity also have a complete form of ANR in 94% of cases compared with 66.7% of non-hyperactive; significant differences were found also in thought and attention CBCL and YSR subscales, combined with major internalizing problems. CONCLUSION: This study provides preliminary data which can orient research towards the development of specific treatments for the hyperactivity, in order to improve the prognosis and thus avoid the chronicity of the disorder and the development of complications in adult life.

Experimental investigation of the flow inside a saxophone mouthpiece by particle image velocimetry.

An experimental study of the flow inside a saxophone mouthpiece in playing conditions is carried out by means of particle image velocimetry at high acquisition rate. Planar velocity measurements on the midsection of a Plexiglas tenor saxophone mouthpiece are performed, respectively, in the mouthpiece baffle and in the reed channel. Sequences of velocity fields inside the mouthpiece baffle and around the reed tip are shown for one reed duty cycle. Maxima of the velocity fluctuations are observed at the upper surface of the mouthpiece at a distance between five and ten reed apertures from the tip. The proper orthogonal decomposition analysis reveals that almost 50% of the kinetic energy in the baffle is distributed in the first two modes displaying a periodic behavior at the fundamental frequency, the rest being turbulent flow behavior. The measured dynamical vena contracta coefficient at the inlet is reasonably constant around the value of 0.6 for reed positions far from closure. This is in agreement with existing steady flow analytical models and previous experimental results.