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Background To investigate timely access to and the time needed to complete the diagnostic path of children and adolescents with suspected attention deficit hyperactivity disorder (ADHD) in the 18 Italian Lombardy Region ADHD reference centers. Methods Data of children and adolescents enrolled in the Regional ADHD disease-oriented Registry for suspected ADHD who requested their first visit in 2013–2017 were analyzed. Results The sample comprised 2262 children and adolescents aged 5–17 years who accessed the ADHD centers for diagnostic classification and management. The median waiting time was of 177 days (range 66–375) from the request for the initial appointment to the completion of the diagnostic path, with a three - fold difference between centers. In addition to the center, the strongest significant predictors of long waiting times were age comorbidities, the severity of the disorder, and having already completed some diagnostic procedures provided by the common standard path. Conclusions To guarantee an equal standard of care in ADHD centers for all children and adolescents there is a pressing need to reduce the times to complete the diagnostic path. It is the task of both policymakers and each center to optimize the quality of the service and of the care delivered.

Objective: We aimed to define the sociodemographic, clinical, and prescription profiles of the participants enrolled in the Italian Lombardy ADHD Register. Method: Data on patients evaluated by the 18 regional ADHD reference centers in the 2012 to 2013 period were analyzed. Results: Seven hundred fifty-three of 1,150 (65%) suspected patients received a diagnosis of ADHD. In 24% of cases, there was a family history of ADHD. Four hundred eighty-three (64%) patients had at least one psychopathological disorder, the more common of which were learning disorders (35%). Eighty-four percent of patients received a prescription for psychoeducational interventions, 2% received only pharmacological treatment, and 14% a combination of both. Compared with patients treated with psychoeducational intervention alone, patients with drug prescriptions more commonly presented values of Clinical Global Impressions - Severity scale (CGI-S) of 5 or higher ( p < .0001). Conclusion: A continuous and systematic monitoring of patterns of care is essential in promoting significant improvements in clinical practice and ensuring an efficient and homogeneous quality of care.

OBJECTIVE: This study aimed to evaluate the surgical treatment of acute pancreatitis in Italy and to assess compliance with international guidelines. METHODS: A series of 1173 patients in 56 hospitals were prospectively enrolled and their data analysed. RESULTS: Twenty-nine patients with severe pancreatitis underwent surgical intervention. Necrosectomy was performed in 26 patients, associated with postoperative lavage in 70% of cases. A feeding jejunostomy was added in 37% of cases. Mortality was 21%. Of the patients with mild pancreatitis, 714 patients with a biliary aetiology were evaluated. Prophylactic treatment of relapses was carried out in 212 patients (36%) by cholecystectomy and in 161 using a laparoscopic approach. Preoperative endoscopic retrograde cholangiopancreatography was associated with cholecystectomy in 83 patients (39%). Forty-seven patients (22%) were treated at a second admission, with a median delay of 31 days from the onset of pancreatitis. Eighteen patients with severe pancreatitis underwent cholecystectomy 37.9 days after the first admission. There were no deaths. DISCUSSION: The results indicate poor compliance with published guidelines. In severe pancreatitis, early surgical intervention is frequently performed and enteral feeding is seldom used. Only a small number of patients with mild biliary pancreatitis undergo definitive treatment (i.e. cholecystectomy) within 4 weeks of the onset of pancreatitis.

The Italian Association for the Study of the Pancreas released a diagnostic and therapeutic algorithm for acute pancreatitis in 1999.This study focused on the analysis of the therapeutic approach for the treatment of acute pancreatitis in Italy.One thousand, one hundred and seventy-three patients were recruited: 1006 patients (85.8%) had mild acute pancreatitis (MAP) and 167 (14.2%) had the severe acute pancreatitis (SAP); 161 patients showed pancreatic necrosis at computed tomography; 121 patients (10.3%) had sequelae and 36 (3.1%) died.Non-steroidal anti-inflammatory drugs and tramadol were used more frequently in patients with the MAP whereas opioids and the association schedules were used more frequently in patients with the SAP (P0.001). Gabexate mesilate was utilised in 831 out of 1173 patients (70.8%); in particular, gabexate mesilate was used in 70.6% patients with MAP and in 73.1% of those with SAP (P=0.521). The duration of the drug administration was significantly shorter in those having MAP than in those having the SAP (P0.001). The antibiotics most frequently used for the prophylaxis against infection from pancreatic necrosis (43.1%) were carbapenems. Only a small number of patients received enteral nutrition (4.7%). Endoscopic retrograde cholangiopancreatography was carried out in 344 of the 1173 patients (29.3%). Surgery was performed in 48 with SAP (19 had elective biliary surgery and 29 had pancreatic surgery).The results of this survey indicate a lack of compliance with the guidelines which regard the indications mainly for interventional endoscopy and surgery.

Objectives To investigate the real-life experience of patients affected by neovascular age-related macular degeneration (nAMD), in the healthcare pathway for the management of the disease, using a "patient journey" and narrative method approach. Methods The patient journey of subjects affected by nAMD was designed using a process-mapping methodology involving a team from 11 Italian centres. Subsequently, narratives were collected from nAMD patients and family members. The interviews were analyzed using the narrative medicine methodology. Results Eleven specialized retina centres across Italy were involved and 205 narratives collected. In 29% of cases, patients underestimated their symptoms or attributed them to non-pathological causes, thus delaying the specialist consultation. The delay in accessing to care was due to a lack of awareness of this disease (50% of the participants didn't know what nAMD is) and to critical issues faced at first visit (long waiting lists, failed diagnosis, underestimation of the problem). Despite anti-VEGF therapies were perceived as effective in improving or stabilizing vision in 91% of narratives collected, 77% of patients still reduced or ceased daily activities such as reading and driving. Within the pathway of care there was not a multidisciplinary approach, and the patients were treated just by the ophthalmologist. Conclusions nAMD may significantly affect the quality of life of affected patients, both from a functional and psychological point of view. The narrative medicine approach highlights some critical points in the healthcare journey of nAMD patients and represents a useful background in implementing patient management algorithms and pathways of care.

Francesca Simonelli,1 Andrea Sodi,2 Benedetto Falsini,3,4 Giacomo Bacci,5 Giancarlo Iarossi,6 Valentina Di Iorio,1 Dario Giorgio,2 Giorgio Placidi,3,4 Assia Andrao,7 Luigi Reale,8 Alessandra Fiorencis,8 Manar Aoun9 1Eye Clinic, Multidisciplinary Department of Medical, Surgical and Dental Sciences, University of Campania “L. Vanvitelli”, Naples, Italy; 2Department of Neuroscience, Psychology, Drug Research and Child Health, University of Florence, Florence, Italy; 3UOC Oftalmologia, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy; 4Dipartimento Testa-collo e organi di senso, Università Cattolica del Sacro Cuore, Rome, Italy; 5Paediatric Ophthalmology Unit, Children’s Hospital “A. Meyer”, University of Florence, Florence, Italy; 6Ophthalmology Department, Bambino Gesù IRCCS Paediatric Hospital, Rome, Italy; 7Retina Italia Onlus Association, Milan, Italy; 8Healthcare Department, Fondazione ISTUD, Milan, Italy; 9Medical Department, Novartis Farma, Origgio, ItalyCorrespondence: Luigi RealeHealthcare Department, Fondazione ISTUD, via Paolo Lomazzo 19, Milano, 20124, ItalyTel +390323933801Email lreale@istud.itFrancesca Simonelli Tel +390817704501Email francesca.simonelli@unicampania.itPurpose: Timely detection and multidisciplinary management of RPE65-related inherited retinal disorders (IRDs) can significantly improve both disease management and patient care. Thus, this Narrative Medicine (NM) project aimed to investigate the evolution of the care pathway and the expectations on genetic counseling and gene therapy by patients, caregivers, and healthcare professionals.Patients and Methods: This project was conducted between July and December 2020, involving five Italian eye clinics specialized in IRDs, targeted pediatric and adult patients, their caregivers, attending retinologists and multidisciplinary healthcare professionals. Narratives and parallel charts, together with a sociodemographic survey, were collected through the project webpage. In-depth interviews were conducted with Patient Association (PA) members and multidisciplinary healthcare professionals. All data were entered into the Nvivo Software for coding and analysis.Results: Three pediatric and five adult patients with early-onset RPE65-related IRDs as well as eight caregivers were enrolled; 11 retinologists globally wrote 27 parallel charts; in-depth interviews were done with five multidisciplinary healthcare professionals and one PA member. Early diagnosis remains challenging, and patients reported to have changed up to 10 healthcare professionals before accessing their specialized center. Despite the oftentimes lack of awareness of patients and caregivers on the purpose of genetic testing, participants generally consider gene therapy as a therapeutic chance and a historic breakthrough for the management of RPE65-related IRDs. Well-organized networks to support the patient’s referral to specialized centers – as well as a proper communication of the clinical and genetic diagnosis and the multidisciplinary approach – emerge as crucial aspects in facilitating an early diagnosis and management and a timely initiation of the rehabilitation pathway.Conclusion: The project investigated the RPE65-related IRDs care pathway while integrating the different perspectives involved through NM. The analysis explored the patient’s pathway in Italy and confirmed the need for a well-organized network and multidisciplinary care while highlighting several preliminary areas of improvement in the management of RPE65-related IRDs.Keywords: IRDs management, multidisciplinary, inherited retinal dystrophies, diagnosis, patient’s pathway

The main aim of this study was to estimate the costs associated with diagnostic assessment and 1-year therapy in children and adolescents enrolled in 18 ADHD reference centres. Data concerning 1887 children and adolescents from the mandatory ADHD registry database during the 2012–2014 period were analysed. The overall diagnostic and treatment costs per patient amounts to €574 and €830, respectively. The ADHD centre, the school as sender, and the time to diagnosis constitute cost drivers. Non-pharmacological therapy resulted as being more expensive for patients concomitantly treated with drugs (€929) compared to those treated with psychological interventions alone (€590; p = 0.006). This study gives the first and reliable estimate of the costs associated with both diagnosis and treatment of ADHD in Italy. Although costs associated with mental disorders are difficult to estimate, continuing efforts are need to define costs and resources to guarantee appropriate care, also for ADHD. Electronic supplementary material The online version of this article (doi:10.1186/s13033-017-0140-8) contains supplementary material, which is available to authorized users.

This article describes the development and clinical impact of the Italian Regional ADHD Registry, aimed at collecting and monitoring diagnostic and therapeutic pathways of care for attention-deficit hyperactivity disorder children and adolescents, launched by the Italian Lombardy Region in June 2011. In particular, the model-based software used to run the registry and manage clinical care data acquisition and monitoring, is described. This software was developed using the PROSAFE programme, which is already used for data collection in many Italian intensive care units, as a stand-alone interface case report form. The use of the attention-deficit hyperactivity disorder regional registry led to an increase in the appropriateness of the clinical management of all patients included in the registry, proving to be an important instrument in ensuring an appropriate healthcare strategy for children and adolescents with attention-deficit/hyperactivity disorder.

Objective. The aim of this study was to describe the experiences of parents and clinicians in relation to the transition from child and adolescent neuropsychiatric services (CANPS) to adult services for people with attention deficit hyperactivity disorder (ADHD) in Italy. Methods. Parents of people with ADHD who reached the transition boundary for CANPS were sampled from the A.I.F.A. association (Italian Association of ADHD Families). We thematically analyzed informative and qualitative questionnaires completed by parents and clinicians. Results. Parents’ (n = 24) and clinicians’ (n = 27) experiences differed slightly on challenges and unmet needs, whereas clinicians agreed on the variables required for an optimal transition process. Poor transition and multiple barriers to such care were identified. Specifically, far fewer people received services, especially public health services, after reaching the age of 18, and perceived barriers included problems with user access, limited transition protocols, poor service coordination, and possible lack of ADHD-related knowledge on the part of adult practitioners. Conclusions. Care continuity in mental healthcare remains a need to be prioritized and better defined also for ADHD patients (and their parents). Parents’ and clinicians’ experiences are more likely to be positive if transition management is characterized by a gradual preparation, a period of parallel care, and commonly acknowledged, clear information on available services and how to access them. Identifying the needs and barriers of the people representing the different roles (clinicians, parents, and users) involved in the transition to adult mental health services is of particular importance in designing effective, shared transfer planning procedures.

BackgroundData are progressively accumulating regarding the transition to adult services.MethodsA comprehensive search using the MEDLINE, Embase, PsycINFO, and Cochrane databases up until 16 March 2015 was conducted in order to summarize recent evidence on the transition from child to adult mental health services for patients with mental disorders. Authors extracted data and assessed study quality independently.ResultsThe main findings of the 33 included studies were discussed taking into consideration four aspects: experiences of patients, carers, and clinicians, accounts of transition, current services models and protocols, and outcomes of transition. Of the 33 studies, 17 focused on a specific mental disorder: seven on attention deficit hyperactivity disorder, four on intellectual disability, three on eating disorders, two on serious emotional disorders and one on autism spectrum disorder. An attempt was also made to integrate the studies’ conclusions in order to improve transitional care.ConclusionsThe review reveals an evident need for longitudinal, controlled, health services research to identify and evaluate optimal service models with systematic and seamless transition protocols for patients with mental disorders requiring continuity of care into adult mental services.

The aim of this study was to monitor the pattern of service attendance and antipsychotic use in youth with psychiatric disorders crossing age boundaries for paediatric mental health services. Regional administrative health databases were used to identify subjects born in the 1989–1992 period, who were hospitalised for psychiatric disorders and had both outpatient visits and antipsychotic prescriptions between the age of 16 and 17 years. Information about service use, antipsychotic medication, and hospitalizations during the transition period covering the age of 18–20 years was collected. A total of 144 patients were identified. Risperidone was the most commonly prescribed drug (28% of youths), followed by haloperidol (22%) and olanzapine (19%). In early adulthood, 117 of 144 (81%) subjects were still attending a mental health service: 43% of whom were receiving parallel care, and 47 (40%) of whom were being seen by adult, and 20 (17%) by child, psychiatrists. In all, 99 of 144 (69%) continued antipsychotic treatment into adulthood, 65 of whom (66%) switched to another drug, with an increase in aripiprazole, and a reduction of haloperidol and chlorpromazine, prescriptions. Less than half (45%) were re-admitted for psychiatric disorders, mainly for schizophrenia. In conclusion, only 4 out of 10 adolescents completed the transition to adult services by the age of 20 years, while 30% discontinued drug therapy and only a third maintained the treatment received during adolescence. Monitoring therapeutic pathways in this challenging life period is essential, and further analyses on the impact of service transition on pharmacological treatment are ongoing.

Dear Editor, In their July issue paper, Hodgkins et al. concluded that “European patients may benefit from better standardization of ADHD management across countries and additional treatment options” [2]. According to science and human rights, all management should be appropriate, evidence-based, and up-to-date, and all patients should be guaranteed the best available treatment. Thus, “better standardization” and “additional treatment options” refer to a limited retrospective study that was also potentially dated. The broad, discretionary criteria in sampling both physicians and patients consistently affected results, leading to imbalance within and between countries. For example, despite the study's selection of “physicians with ADHD expertise,” 15 % of patients in the Netherlands and 24 % in UK received a diagnosis of ADHD without either of the two main diagnostic criteria (ICD-10 or DSM-IV). Starting therapy, duration, and intensity/dosage were not reported. The authors' comments concerning therapy switch, satisfaction, outcome, and treatment management are thus not supported by adequate analyses. Authors reported, for example, that symptom control was strongest in patients receiving long-acting methylphenidate (36 %) and weakest in patients receiving behavioral therapy (BT) (only 16 %), but duration and intensity should be considered in BT. Another important bias of the study is the long follow-up period (2–5 years), knowing that ADHD symptoms are affected by the duration and type of treatment [3]. Since only 34.5 % of included patients were treated with a combination of pharmacotherapy and BT, according to NICE guideline recommendations [4], only 30.8% of patients would be expected to show “complete symptom control.” Lastly, the profile of ADHD management resulting from this study is completely different from the Italian reality [1, 5]. One of the acknowledged needs of ADHD patients is effective evidence-based interventions, and this can be achieved through (useful) data collection, assessment of prevalence, case identification, and outcome measurements. This work does not seem to contribute to this aim.

Soft X-ray contact microscopy (SXCM), using a pulsed X-ray source, offers the possibility of imaging the ultrastructure of living biological systems at sub-100 nm resolution, We have developed a table-top pulsed plasma S-ray source for this application, generated by a large-volume XeCl laser, achieving a good conversion efficiency to 'water-window' X-rays (hv approximate to 280-530 eV). Optimum plasma conditions for SXCM are discussed, including the effect of pulse duration, target material and resist development time on image resolution. Soft X-ray contact images of Chlamydomonas dysosmos (unicellular alga) and of the cyanobacterium Leptolyngbya are shown.