Quality of care indicators for head and neck cancers: The experience of the European Project RARECAREnet

Background: Monitoring and improving quality of cancer care has become pivotal today. This is especially relevant for head and neck cancers since the disease is complex, it needs multi therapy, patients tend to be older, they tend to have comorbidities and limited social support. However, information on quality of care for head and neck cancers is scarce. In the context of the project "Information Network on Rare Cancers" we aimed to identify indicators of quality of care specific for the head and neck cancers management and to measure the quality of care for head and neck cancers in different EU Member States. Methods: We defined indicators of quality of care for head and neck cancers based on a multidisciplinary and expert-based consensus process at a European level. To test the proposed indicators, we performed an observational population-based retrospective study in four countries (Ireland, Italy, Netherlands, and Slovenia) in the years 2009-2011. Results: The main quality indicators identified are: availability of formalized multidisciplinary team, participation in clinical and translational research; timeliness of care, high quality of surgery and radiotherapy, and of pathological reporting. For head and neck cancers, the quality of care did not reach the optimal standards in most of the countries analyzed. A high proportion of patients was diagnosed at an advanced disease stage, showed delays in starting treatment (especially for radiotherapy), and there was only a very limited use of multi therapy. Conclusions: According to the achieved consensus, indicators of quality of care for head and neck cancers have to cover the patient journey (i.e., diagnosis and treatment). Our results, showed suboptimal quality of care across countries and call for solutions for ensuring good quality of care for head and neck cancer patients in all EU countries. One possible option might be to refer head and neck cancer patients to specialized centers or to networks including specialized centers

Head and neck cancers survival in Europe, Taiwan, and Japan: results from RARECAREnet Asia based on a privacy-preserving federated infrastructure

BackgroundThe head and neck cancers (HNCs) incidence differs between Europe and East Asia. Our objective was to determine whether survival of HNC also differs between European and Asian countries.MethodsWe used population-based cancer registry data to calculate 5-year relative survival (RS) for the oral cavity, hypopharynx, larynx, nasal cavity, and major salivary gland in Europe, Taiwan, and Japan. We modeled RS with a generalized linear model adjusting for time since diagnosis, sex, age, subsite, and histological grouping. Analyses were performed using federated learning, which enables analyses without sharing sensitive data.FindingsFive-year RS for HNC varied between geographical areas. For each HNC site, Europe had a lower RS than both Japan and Taiwan. HNC subsites and histologies distribution and survival differed between the three areas. Differences between Europe and both Asian countries persisted even after adjustments for all HNC sites but nasal cavity and paranasal sinuses, when comparing Europe and Taiwan.InterpretationSurvival differences can be attributed to different factors including different period of diagnosis, more advanced stage at diagnosis, or different availability/access of treatment. Cancer registries did not have stage and treatment information to further explore the reasons of the observed survival differences. Our analyses have confirmed federated learning as a feasible approach for data analyses that addresses the challenges of data sharing and urge for further collaborative studies including relevant prognostic factors

Rare thyroid malignancies in Europe : data from the information network on rare cancers in Europe (RARECAREnet)

Data will be made available on requestPeer reviewedPostprin

Rare ovarian tumours: Epidemiology, treatment challenges in and outside a network setting

PURPOSE OF THE REVIEW: More than 50% of all gynaecological cancers can be classified as rare tumours (defined as an annual incidence of <6 per 100,000) and such tumours represent an important challenge for clinicians. RECENT FINDINGS: Rare cancers account for more than one fifth of all new cancer diagnoses, more than any of the single common cancers alone. Reviewing the RARECAREnet database, some of the tumours occur infrequently, whilst others because of their natural history have a high prevalence, and therefore appear to be more common, although their incidence is also rare. Harmonization of medical practice, guidelines and novel trials are needed to identify rare tumours and facilitate the development of new treatments. Ovarian tumours are the focus of this review, but we comment on other rare gynaecological tumours, as the diagnosis and treatment challenges faced are similar. FUTURE: This requires European collaboration, international partnerships, harmonization of treatment and collaboration to overcome the regulatory barriers to conduct international trials. Whilst randomized trials can be done in many tumour types, there are some for which conducting even single arm studies may be challenging. For these tumours alternative study designs, robust collection of data through national registries and audits could lead to improvements in the treatment of rare tumours. In addition, concentring the care of patients with rare tumours into a limited number of centres will help to build expertise, facilitate trials and improve outcomes

Distributed Energy Resource Participation in Wholesale Markets: Lessons from the California ISO

The California Independent System Operator (CAISO) aims to “support” and “facilitate” wholesale market participation by aggregations of distributed energy resources (DERs)—solar panels, batteries, and other energy technologies installed in small quantities at scattered locations. This reflect CAISO’s recognition that “[t]he number and diversity of these resources are growing and represent an increasingly important part of the future grid.” However, CAISO has also recognized that system operators can only draw on DERs if they perform reliably, their operation is predictable and transparent, and their contributions are large enough to be economical both to their owners and the grid as a whole. While the aggregation of multiple DERs can support each of these conditions, providing for such aggregation will require adjustments to existing wholesale market rules. CAISO is not alone in recognizing the potential contributions to market performance of aggregated DERs, but it was the first wholesale market operator to begin exploring how to make the adjustments necessary to enable their participation. Similar programs for the aggregation of demand response have existed in markets operated by CAISO and other independent system operators and regional transmission organizations (ISO/RTOs) for several years. Those programs do not, however, allow energy exports to the bulk power grid. To address this limitation, CAISO adopted a new program, which allows DERs to provide energy and ancillary services to the grid. At the time of writing, CAISO’s program had attracted just four participants—DER providers or “DERPs”—none of which had yet begun operating in the energy or ancillary services markets. Meanwhile, the other ISO/RTOs and the Federal Energy Regulatory Commission (FERC or the Commission) that oversees them are following CAISO into the fray. The FERC is considering requiring all ISO/RTOs to adopt their own programs for DER aggregation, which may be modeled on the one currently used by CAISO.4 Despite this, however, there has been no comprehensive review of how the CAISO program is operating and why it has attracted so few participants. This article is intended to fill that gap. This article examines CAISO’s DER program after its first year of operation. It draws on written comments submitted to CAISO in the course of program development and on interviews the authors conducted with stakeholders—including active and potential DERPs, investor-owned utilities, and customer groups—to identify “barriers” to program participation. Irrespective of whether these barriers are appropriate—e.g., to ensure continued wholesale system reliability as DER penetration increases—they have clearly prevented the DER program fulfilling CAISO’s stated goal. The barriers should, therefore, be considered by other ISO/RTOs in developing programs with similar goals. The authors identify six key lessons that other ISO/RTOs and regulatory authorities can learn from CAISO’s experience

Incidence and Survival of Patients With Conjunctival Melanoma in Europe.

Conjunctival melanoma (CM) is a rare ocular tumor. Estimates of incidence and survival of patients with CM are important to researchers and policy makers. To estimate incidence and survival of patients with CM in Europe. This population-based cohort study used data from 41 European cancer registries adhering to the RARECAREnet project. All individuals diagnosed as having malignant CM from January 1995 to December 2007 coded according to the International Classification of Diseases for Oncology, Third Edition codes C69.0 (conjunctiva) and 8720-8780 (melanoma) were included. Analysis began March 2019. Trend estimates for incidence and for 5-year relative survival (the ratio of the measured survival of patients to the expected survival in the general population for the same country, age, sex, and calendar year). Crude, age-standardized, and bayesian incidence rates were calculated. Five-year relative survival was calculated by the Ederer II method with the cohort and period approach. A total of 724 patients 15 years or older (512 [70.7%] were 55 years or older; 366 [50.6%] were female) were analyzed with an overall crude incidence of CM (per 1 000 000 person/y) of 0.46 (95% CI, 0.42-0.49). Crude incidence was similar in men and women (0.48; 95% CI, 0.44-0.54 and 0.46; 95% CI, 0.41-0.51, respectively) and increased with age. Age-standardized incidence increased over time only in men and was the highest in Norway and the Netherlands (more than 0.70). Only 1 case in 14 years was estimated to occur in Iceland vs about 20 cases per year in large countries such as France and Germany. Percentage of 5-year survival (83.5 overall; 95% CI, 78.6-87.3) was not different between adult and elderly patients but showed large geographical disparities across European regions (range, 66-89) and improved markedly in male patients (from 76 in 1995-1998 to 86 in 2003-2007, with a difference of 10.2 [95% CI, 1.3-19.2]; P  Although these data are only available through 2007 and based on registries not uniformly covering the European population, the study provides the first Europe-wide estimates of the incidence and relative survival of patients with CM using population-based data. Geographical differences in survival indicate room for outcome improvement in Southern, Northern, and Eastern European countries

Incidence and survival of rare cancers in the US and Europe

Geographical variability of cancer burden was almost exclusively estimated for common cancers. Since rare cancers (RC) have become an area of priority for basic and clinical research and public health organizations, this paper provides, using a common methodology, a detailed comparison of incidence and survival for RC in the US and Europe. We estimated incidence and net survival of 199 malignant RC from data of 2 580 000 patients collected by 18 US-SEER and 94 European registries, diagnosed within the most recent common period 2000-2007. RC were defined according to the criterion of crude annual incidence rates 65+ years of age. Use of standardized methods evidenced that incidence and survival rate of majority of RC were higher in the United States compared to Europe. Possible reasons for such differences, requiring further studies, include distribution of risk factors, ability to diagnose RC, different registration practices, and use of updated International Classification of Diseases for Oncology

An Investigation of Unstructured Play in Nature and its Effect on Children’s Self-Efficacy

ABSTRACT AN INVESTIGATION OF UNSTRUCTURED PLAY IN NATURE AND ITS EFFECT ON CHILDREN’S SELF-EFFICACY Paul Starling Dr. Lani Nelson-Zlupko Much attention is being given to childhood physical and mental well-being as it relates to outdoor play in nature. This is particularly relevant as today’s children are spending much less time outdoors, and even less time in unstructured play compared to indoor time or highly regulated supervised activity. Recent research indicates that outdoor unstructured play may be essential to core mastery in children: it has been linked to improvements in cognitive, behavioral, and even physical functioning. This study investigated whether unstructured play in nature had an effect on children’s self-efficacy. An original, mixed methods, empirical study was conducted which enlisted 21 subjects, (n=11 male) and (n=10 female) ages 8-12. These subjects took part in unstructured play in nature within a 3-week period of time while attending a summer camp. Subjects played anywhere from 2-5 days in 45-minute play sessions. Subjects completed the modified widely used Self-Efficacy Scale (SES) and the Emotional Self-Efficacy Scale (ESES) at pre and post conditions in order to explore whether or not exposure to unstructured outdoor play in nature contributes to increases in perceived self-efficacy. Quantitative results indicated no difference at post-test but when frequency of exposure to the experimental condition was factored in a lowering of self-efficacy as measured by the modified SES surfaced. Statistics also revealed that the exposure to the experimental condition alone was not significant enough to account for the decrease in self-efficacy scores. Qualitative field notes taken throughout the study indicated the contrary: there were indeed multiple instances of self-efficacy development

Burden and centralised treatment in Europe of rare tumours: results of RARECAREnet-a population-based study

International audienc