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In this article, we aim to estimate future long-term care needs and expenditures in Quebec while proposing and evaluating a reform package that could deliver increased coverage and be more financially sustainable than current policy. This reform package consists of a shift toward more intensive use of home care while increasing public coverage of care needs. A key feature of the proposed reform is to improve users’ ability to choose their provider with the creation of a senior’s care account, an account that allows individuals in need to purchase services from several providers, including both home and institutional care. To improve the neutrality of public support across care arrangements, we also propose an increase in the resident contribution in nursing homes while favouring the continued use of existing tax credits to help seniors with lower care needs. Using detailed dynamic modelling of care needs, living arrangements, and expenditures, we estimate that long-term care needs will grow rapidly in the next two decades, and the costs will quickly become prohibitive under current policy. We show that substantial cost savings may exist.

Les centres d’hébergement et de soins de longue durée (CHSLD) représentent une part importante du budget alloué aux soins aux personnes aînées au Québec. La majorité des personnes qui y sont hébergées présentent des incapacités importantes. La dotation en ressources humaines dans ces établissements demeure un enjeu. Ce projet avait pour objectif de réaliser une étude pilote pour répondre aux questions suivantes : comment ont évolué les besoins des résidents et l’offre de services en ressources humaines entre 2016-2017 et 2018-2019 ? Comment a évolué l’adéquation offre de soins/besoins des résidents au cours de la période ? Comment ont évolué les ordonnances de neuroleptiques en CHSLD pour les années financières allant de 2016-2017 à 2018-2019? Les résultats démontrent un important déficit en heures travaillées requises pour répondre aux besoins des résidents lors des années 2016-2017 et 2017-2018. Bien que ce déficit diminue considérablement au cours de l’année 2018-2019, l’offre de service n’a pas comblé la totalité des besoins des résidents, et ce autant pour les soins infirmiers que les services d’assistance. Cette étude suggère que les doses moyennes des ordonnances actives de neuroleptiques ont diminué en moyenne de 0,1 mg dans la totalité des CHSLD. Ce projet pilote montre qu’il est faisable, mais complexe d’utiliser les données administratives afin d’analyser des phénomènes cliniques.

Revalorization of mining residues is of central concerns to the mining industry and the environment. Specifically, environmental management of residual products from the exploitation of chrysotile in the Thetford Mines region is one of the government concerns in Quebec and Canada. This work uses mining wastes in a second resource generation for production of magnesium from cheap and health-friendly mineral sources; the goal being to produce chrysotile-depleted pre-concentrates for a use as precursors in the leach off extraction of magnesium. The concentration of lizardite/antigorite from chrysotile containing serpentine rock mine tailings originating from the Carey Mine site in East-Broughton (Québec) was carried out using a suite of hydrocyclone, settling/decantation and magnetic separations. Four size classes of the mining residue, namely (−3150,+1580), (−1580, +600), (−600, +300) and (−300, +150) μm, were tested with an aim to reduce the level of objectionable asbestos fibers to allow access to the safer Mg-bearing minerals contained in the mine waste sources. The asbestos fibers clean-up consisted of subjecting the sieved fractions to two hydrocyclone steps, six settling/decantation steps and two magnetic separation steps. The best results were achieved when the hydrocyclone separators led to Mg recovery of 85% (±4) for the coarsest size fraction size. Both hydrocyclone underflow streams underwent settling/decantation separations. The settling tests lasted 30 min and led to Mg recoveries of 82.5% (±1.8) of Mg in the ultimate concentrate. SEM characterizations revealed that it was possible to reduce substantially the amount of chrysotile fibers to render the coarse-sized fraction in the mining waste usable while significantly lowering the health risk of the fibers. A two-step magnetic separation was applied to the final settling/decantation underflow to remove magnetic minerals such as magnetite from the lizardite/antigorite concentrate. The final quasi-non-magnetic chrysotile-depleted lizardite/antigorite concentrate allowed sample recovery of 62.5% (±0.9) wt. of Mg. These preliminary results are intended as a first compulsory step in support of viable restoration and sustainable development scenarios for the Thetford Mines mining sites as second-breath sources for valuable magnesium.

Background Independence is related to the aging process. Loss of independence is defined as the inability to make decisions and participate in activities of daily living (ADLs). Independence is related to physical, psychological, biological, and socioeconomic factors. An enhanced understanding of older people’s independence trajectories and associated risk factors would enable the develop early intervention strategies. Methods Independence trajectory analysis was performed on patients identified in the Unité de Prévention de Suivi et d’Analyse du Vieillissement (UPSAV) database. UPSAV cohort is a prospective observational study. Participants were 221 community-dwelling persons aged ≥75 years followed for 24 months between July 2011–November 2013 and benefits from a prevention strategy. Data were collected prospectively using a questionnaire. Independence was assessed using the “Functional Autonomy Measurement System (Système de Mesure de l’Autonomie Fonctionnelle (SMAF))”. Group-based trajectory modeling (GBTM) was performed to identify independence trajectories, and the results were compared with those of k-means and hierarchical ascending classifications. A multinomial logistic regression was performed to identify predictive factors of the independence trajectory. Results Three distinct trajectories of independence were identified including a “Stable functional autonomy (SFA) trajectory” (53% of patients), a “Stable then decline functional autonomy decline (SDFA) trajectory” (33% of patients) and a “Constantly functional autonomy decline (CFAD) trajectory” (14% of patients). Not being a member of an association, and previous fall were significantly associated of a SDFA trajectory (P P Conclusions Community-living older persons exhibit distinct independence trajectories and the predictive factors. The evidence from this study suggests that the prevention and screening for the loss of independence of the older adults should be anticipated to maintaining autonomy.

Background: While responsible innovation in health (RIH) suggests that health innovations could be purposefully designed to better support health systems, little is known about the system-level challenges that it should address. The goal of this paper is thus to document what is known about health systems’ demand for innovations. Methods: We searched 8 databases to perform a scoping review of the scientific literature on health system challenges published between January 2000 and April 2016. The challenges reported in the articles were classified using the dynamic health system framework. The countries where the studies had been conducted were grouped using the human development index (HDI). Frequency distributions and qualitative content analysis were performed. Results: Up to 1391 challenges were extracted from 254 articles examining health systems in 99 countries. Across countries, the most frequently reported challenges pertained to: service delivery (25%), human resources (23%), and leadership and governance (21%). Our analyses indicate that innovations tend to increase challenges associated to human resources by affecting the nature and scope of their tasks, skills and responsibilities, to exacerbate service delivery issues when they are meant to be used by highly skilled providers and call for accountable governance of their dissemination, use and reimbursement. In countries with a low and medium HDI, problems arising with infrastructure, logistics and equipment were described in connection with challenges affecting procurement, supply and distribution systems. In countries with a medium and high HDI, challenges included a growing demand for drugs and new technology and the management of rising costs. Across all HDI groups, the need for flexible information technologies (IT) solutions to reach rural areas was underscored. Conclusion: Highlighting challenges that are common across countries, this study suggests that RIH should aim to reduce the cost of innovation production processes and attend not only to the requirements of the immediate clinical context of use, but also to the vulnerabilities of the broader system wherein innovations are deployed. Policy-makers should translate system-level demand signals into innovation development opportunities since it is imperative to foster innovations that contribute to the success and sustainability of health systems.

The aims of this article are to describe the development of a self-administered questionnaire assessing the core values in the field of public health ( radardesvaleurs.com ) and to report the results of a study testing the questionnaire’s test-retest reliability, internal consistency and construct validity. A 24-item questionnaire grounded in the conceptual framework of Shalom H. Schwartz (2000) was developed by a group of international experts in public health. Six scores were generated, each linked to a specific value and put on three axes: individualism-equity, autonomy-conformity and risk-security. The questionnaire was submitted to students attending the School of Public Health of the Universite de Montreal (ESPUM) (n = 700). A total of 401 students completed the questionnaire, 52 of whom completed it again one month later. For the test-retest reliability, all percentages of agreement were equal or superior to 60% except for a single question (50%). All Cohen’s kappa coefficients of individual items were strong (> 0.60) except for three questions which presented a very high percentage of agreement. The Intraclass Correlation coefficients of the values’ scores varied between 0.27 and 0.77. The three axes’ internal consistency was estimated by Cronbach’s alphas (between 0.46 and 0.74). The exploratory factorial analysis only partially confirmed the questionnaire’s theoretical structure. Despite the limits of the results, the questionnaire has an interesting level of reliability and validity, which makes its pedagogical use pertinent to pursue. The limitation to four items/value, as well as the representativeness of the sampling (ESPUM students), could explain certain empirical shortcomings of the questionnaire.

Supplemental Digital Content is available in the text., Objectives: To identify and appraise articles describing criteria used to prioritize or withhold a critical care admission. Data Sources: PubMed, Embase, Medline, EBM Reviews, and CINAHL Complete databases. Gray literature searches and a manual review of references were also performed. Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines were followed. Study Selection: We sought all articles and abstracts of original research as well as local, provincial, or national policies on the topic of ICU resource allocation. We excluded studies whose population of interest was neonatal, pediatric, trauma, or noncritically ill. Screening of 6,633 citations was conducted. Data Extraction: Triage and/or transport criteria were extracted, based on type of article, methodology, publication year, and country. An appraisal scale was developed to assess the quality of identified articles. We also developed a robustness score to further appraise the robustness of the evidence supporting each criterion. Finally, all criteria were extracted, evaluated, and grouped by theme. Data Synthesis: One-hundred twenty-nine articles were included. These were mainly original research (34%), guidelines (26%), and reviews (21%). Among them, we identified 200 unique triage and transport criteria. Most articles highlighted an exclusion (71%) rather than a prioritization mechanism (17%). Very few articles pertained to transport of critically ill patients (4%). Criteria were classified in one of four emerging themes: patient, condition, physician, and context. The majority of criteria used were nonspecific. No study prospectively evaluated the implementation of its cited criteria. Conclusions: This systematic review identified 200 criteria classified within four themes that may be included when devising triage programs including the coronavirus disease 2019 pandemic. We identified significant knowledge gaps where research would assist in improving existing triage criteria and guidelines, aiming to decrease arbitrary decisions and variability.

Introduction : Examiner les trajectoires des personnes de 65 ans et plus en fin de soins actifs (FDSA) aux deux hopitaux de Sherbrooke, QC par leurs transitions apres leur sortie de l’hopital.Methodes : Trois bases de donnees ont ete jumelees : hospitalisations, visites a l’urgence et hebergements. La periode d’etude est de janvier 2011 a decembre 2015. L’etude inclut seulement les personnes en FDSA. L’analyse statistique fut realisee avec le logiciel SPSS.Resultats : Le quart des personnes en FDSA ont attendu moins de sept jours et 74 % moins de trois semaines. Dans 64,9 % des cas, les personnes furent transferees en service de longue duree, 15,2 % sont retournes a leur domicile ou a une residence privee et 15,9 % ont ete orientees vers une ressource intermediaire. Suite a leur sortie, la moitie des personnes ont demenage vers un autre milieu, surtout celles a domicile ou dans une residence. Les jours-presence en FDSA ont represente 1 % des jours possibles et moins de 2 % des lits dans 86,4 % des jours. Seules 12 % des personnes sont retournees a l’hopital dans les 90 jours suivant leur sortie.Conclusions : L’occupation de lits d’hopital par des personnes FDSA ne semble pas compromettre la capacite de l’hopital. Les 12 % de retours en moins de 90 jours confirment une bonne orientation de la majorite de ces personnes. Nos resultats suggerent une bonne gestion des transferts et une offre adequate d’hebergement et des services a domicile.

Background While there is an extensive literature on Health System (HS) strengthening and on the performance of specific HSs, there are few exhaustive syntheses of the challenges HSs are facing worldwide. This paper reports the findings of a scoping review aiming to classify the challenges of HSs investigated in the scientific literature. Specifically, it determines the kind of research conducted on HS challenges, where it was performed, in which health sectors and on which populations. It also identifies the types of challenge described the most and how they varied across countries. Methods We searched 8 databases to identify scientific papers published in English, French and Italian between January 2000 and April 2016 that addressed HS needs and challenges. The challenges reported in the articles were classified using van Olmen et al.’s dynamic HS framework. Countries were classified using the Human Development Index (HDI). Our analyses relied on descriptive statistics and qualitative content analysis. Results 292 articles were included in our scoping review. 33.6% of these articles were empirical studies and 60.1% were specific to countries falling within the very high HDI category, in particular the United States. The most frequently researched sectors were mental health (41%), infectious diseases (12%) and primary care (11%). The most frequently studied target populations included elderly people (23%), people living in remote or poor areas (21%), visible or ethnic minorities (15%), and children and adolescents (15%). The most frequently reported challenges related to human resources (22%), leadership and governance (21%) and health service delivery (24%). While health service delivery challenges were more often examined in countries within the very high HDI category, human resources challenges attracted more attention within the low HDI category. Conclusions This scoping review provides a quantitative description of the available evidence on HS challenges and a qualitative exploration of the dynamic relationships that HS components entertain. While health services research is increasingly concerned about the way HSs can adopt innovations, little is known about the system-level challenges that innovations should address in the first place. Within this perspective, four key lessons are drawn as well as three knowledge gaps. Electronic supplementary material The online version of this article (10.1186/s12913-017-2585-5) contains supplementary material, which is available to authorized users.

Lehoux et al provide a timely and relevant turn on the broad and ongoing discussion around the introduction of health technology and innovation. More specifically, the authors suggest a demand-driven approach to health innovation that starts from identifying challenges and demands at the health system level. In this commentary, I review a number of underlying implications of their study in relation to positions of technology push and techno-optimism, and to the narrow focus on health technology assessment on economic and clinical values. While Lehoux et al’s scoping review provides very relevant insights with the potential to drive further empirical research, it is less clear about its conceptual basis. In particular, the somewhat artificial distinction between health innovations and health systems is worth further scrutiny. I discuss some potential risks of this separation, and propose to more openly address the co-constitution of health, health systems and technology in future research along the lines suggested by Lehoux et al.

Funding long-term care (LTC) is a challenge under the existing Beveridgean universal healthcare system. The Autonomy Insurance (AI) plan developed in Quebec was an attempt to introduce public LTC insurance into our healthcare system. The AI benefit was based on an assessment of the needs of older people and those with disabilities using a disability scale (SMAF) and case-mix classification system (Iso-SMAF Profiles). Under the plan, the benefit would be used to fund public institutions or purchase services from private organizations. Case managers were responsible for assessments and helping users and their families plan services and decide how to use the AI benefit. Funding AI was based on general tax revenues without capitalized funding, under a separate protected budget program. Projections were made for the additional budget needed to support AI, which would have mitigated the forecast increase in LTC spending due to population aging. All the legal, administrative, funding, training and contractual issues were dealt with, for implementation of the plan in April 2015. Unfortunately, the project was still-born for political reasons, but it demonstrates the feasibility of this essential innovation for Canada.

To determine the palliative care pathways of older patients in Sherbrooke, Qc by examining their transfers to other facilities.This analysis was conducted by linking 3 databases: emergency department, hospitalizations and nursing homes. The study period ranged from January 2011 to December 2015. SPSS was used for statistical analysis. The study only included palliative care patients.25% of patients waited less than 7 days for transfer, and 74% waited less than 3 weeks. 64.9% of patients were transferred to a long-term facility for dependent adults (LTF), 15.2% returned home or were transferred to private accommodation, and 15.9% were transferred to an intermediate care facility. One-half of patients subsequently changed facility, mainly those in homes or intermediate care. Palliative care patient bed occupation rates represented 1% of available bed-days and less than 2% of total beds for 86.4% of days. Only 12% of patients returned to hospital within 90 days after discharge.The number of beds occupied by palliative care patients does not seem to disrupt the hospital capacity. The majority of the palliative care patients were well managed, as reflected by the low readmission rate. Our results indicate good management of transfers and an adequate supply of long-term care facilities and home services.

To present the process and challenges of developing an online competency-based course on public health policy using a collaborative international approach.Five public health experts, supported by an expert in educational technology, adopted a rigorous approach to the development of the course: a needs analysis, identification of objectives and competencies, development of a pedagogical scenario for each module and target, choice of teaching methods and learning activities, material to be identified or developed, and the responsibilities and tasks involved.The 2-credit (90-hour) graduate course consists of six modules including an integration module. The modules start with a variety of case studies: tobacco law (neutral packaging), supervised injection sites, housing, integrated services for the frail elderly, a prevention programme for mothers from disadvantaged backgrounds, and the obligatory use of bicycle helmets. In modules 1, 3, 4 and 5, students learn about different stages of the public policy development process: emergence, formulation and adoption, implementation and evaluation. Module 2 focuses on the importance of values and ideologies in public policy. The integration module allows the students to apply the knowledge learned and addresses the role of experts in public policy and ethical considerations.The course has been integrated into the graduate programmes of the participating universities and allows students to follow, at a distance, an innovative training programme.

Objectif : Présenter le processus et les défis du développement d’un cours en ligne sur les politiques publiques en santé, conçu en collaboration internationale selon une approche par compétences. Méthodes : Cinq experts de santé publique épaulés d’un expert en technologie éducative onttravaillé à l’élaboration du cours en adoptant une démarche rigoureuse : analyse des besoins, élaboration des cibles et des compétences visées, développement d’un scénario pédagogique comportant pour chaque module la cible visée, les éléments de contenu, la méthode d’enseignement, les activités d’apprentissage, le matériel à identifier ou à développer et les responsabilités et tâches impliquées. Résultats : Le cours d’études supérieures de deux crédits (90 heures de travail) comprend six modules dont un module d’intégration. Les modules débutent pardes étudesde cas variées : loi sur le tabac (paquet neutre), sites d’injection supervisée, logement, réseaux intégrés de services pour personnes âgées en perte d’autonomie, programme de prévention pour les futures mères en milieux défavorisés, port obligatoire du casque de vélo. Les modules 1, 3, 4 et 5 visent l’apprentissage des différentes étapes du développement des politiques publiques : émergence, formulation et adoption, mise en œuvre et évaluation. Le module 2 porte sur l’importance des valeurs et des idéologies dans les politiques publiques. Le module d’intégration permet aux étudiants d’appliquer les connaissances acquises et aborde le rôle des expertsdans lespolitiquespubliques etles considérations éthiques. Conclusion : Le cours est intégré aux programmes d’études supérieures des universités participantes et permet à des étudiants de suivre à distance une formation innovante., Objective: To present the process and challenges of developing an online competency-based course on public health policy using a collaborative international approach. methods: Five public health experts, supported by an expert in educational technology, adopted a rigorous approach to the development of the course: a needs analysis, identification of objectives and competencies, development of a pedagogical scenario for each module and target, choice of teaching methods and learning activities, materialto be identified or developed, and the responsibilities and tasks involved. results: The 2-credit (90-hour) graduate course consists of six modules including an integration module. The modules start with a variety of case studies: tobacco law (neutral packaging), supervised injection sites, housing, integrated servicesfor the frail elderly, a prevention programme for mothersfrom disadvantaged backgrounds, and the obligatory use of bicycle helmets. In modules 1, 3, 4 and 5, students learn about different stages of the public policy development process: emergence, formulation and adoption, implementation and evaluation. Module 2 focuses on the importance of values and ideologies in public policy. The integration module allows the students to apply the knowledge learned and addresses the role of experts in public policy and ethical considerations. Conclusion: The course has been integrated into the graduate programmes of the participating universities and allows students to follow, at a distance, an innovative training programme.

Integrated service delivery systems have been proposed as a way to improve the efficacy and efficiency of health-care systems, particularly for patients with multiple needs and complex interactions...

Several models of Integrated Service Delivery (ISD) networks were experimented and tested, but most of them are designed according to a full integration model. PRISMA is the only example of a coordinated-type model to be developed and fully implemented with a process and outcome evaluation. The PRISMA model includes the following components to enhance the integration: (1) co-operation between decision-makers and managers of all services and organizations, (2) the use of a single entry point with a case-finding instrument (PRISMA-7), (3) a case management process, (4) Individualized Service Plans, (5) a unique disability-based assessment tool (SMAF) with a case-mix system (Iso-SMAF profiles), and (6) a computerized system for communicating between institutions and professionals.

The convergence between the Indian plate and the southern margin of the Eurasian continent created an active continental margin from Late Jurassic until about 40 Ma ago, which then evolved to form the Himalaya and the Tibetan Plateau during the continental collision stage. Post-collisional magmatism in southern Tibet, north of the Yarlung Zangbo Suture Zone (YZSZ) has been active since 45 Ma and is related to normal faulting and extensional tectonism. To date no such magmatism was reported within the YZSZ itself. This paper reports on the discovery of Miocene shoshonites within the YZSZ. They are significant because the magma traveled, at least in part, through oceanic crust, thus limiting interaction with the continental crust to the mid-crustal level and which affected the post-collisional magmatic rocks occurring in the northern part of the subduction system. In addition, xenoliths and xenocrysts of crustal origin in these rocks constrain the nature of metamorphic rocks underlying the YZSZ at mid-crustal level. The geochemical signatures of the shoshonitic rocks, including Nd and Sr isotope systematics, indicate derivation from a garnet-bearing middle continental crustal source. Crustal imprint complicates modeling of the petrogenetic processes which occurred prior to mid-crustal ponding of the magma which took place between 11 and 17 Ma at depths of 40 to 50 km. The significant role of crustal contamination raises serious concerns about models proposed for similar magmatic activity elsewhere in the Himalaya and the Tibetan Plateau.

The objective of this study was to explore the relationship of sociodemographic, clinical, and health-services use-related variables with transitions between disability-based profiles. In a longitudinal study of 1386 people aged 75 and over living in the community at baseline, disabilities were assessed annually for up to four years with the Functional Autonomy Measurement System (SMAF), which generates 14 Iso-SMAF profiles. These profiles are grouped into 4 disability states, which are predominant alterations in instrumental activities of daily living (IADLs), mobility, mental functions as well as severe and mixed disabilities. Continuous-time, multi-state Markov modeling was used to identify the factors associated with transitions made by older people between these states and to institutionalization and death. Greater age and receiving help for ADL were associated with four transitions, while altered cognitive functions and hospitalization were associated with three, all involving more decline or less recovery. From mild IADL profiles, men have a higher risk of transitioning to intermediate predominantly mental profiles, while women are at higher risk of transitioning to intermediate predominantly mobility profiles. Unmet needs are associated with deterioration, from mild IADL to intermediate predominantly mobility profiles. These results help understanding the complex progression of disabilities in older people.

O1 The European Social Preferences Measurement (ESPM) study project: social cost value analysis, budget impact, commercial life cycle revenue management, and the economics of biopharmaceutical Research & Development (R&D) Michael Schlander, Soren Holm, Erik Nord, Jeff Richardson, Silvio Garattini, Peter Kolominsky-Rabas, Deborah Marshall, Ulf Persson, Maarten Postma, Steven Simoens, Oriol de Sola Morales, Keith Tolley, Mondher Toumi, Harry Telser O2 Newborn Screening: the potential and the challenges James R Bonham O3 Untreatable disease outcomes - how would we measure them? Helmut Hintner, Anja Diem, Martin Laimer O4 Taking Integrated Care Forward: Experiences from Canada to inspire service provision for people living with rare disease in Europe Rejean Hebert O5 Listening to the patient’s voice: social media listening for safety and benefits in rare diseases Nabarun Dasgupta, Carrie E. Pierce, Melissa Jordan O6 Via Opta: Mobile apps making visually impaired patients’ lives easier Barbara Bori, Mohanad Fors, Emilie Prazakova O7 A report of the IRDiRC “Small Population Clinical Trial” Task Force Simon Day O8 HAE patient identification and diagnosis: An innovative, ‘game changing’ collaboration Thomas J. Croce Jr. O9 Co-creating with the community: primary packaging & administration for people with haemophilia Jonas Fransson, Philip Wood O10 Go with Gaucher, taking forward the next generation. How to involve young people to create a new generation of patient advocates Anne-Grethe Lauridsen, Joanne Higgs, Vesna Stojmirova Aleksovska P1 ODAK – Orphan Drug for Acanthamoeba Keratitis Christina Olsen, Ritchie Head, Antonio Asero, Vincenzo Papa, Christa van Kan, Loic Favennec, Silvana Venturella, Michela Salvador, Alan Krol P5 Rare Navigators help people living with rare diseases to manage the social – and healthcare systems Stephanie J. Nielsen, Birthe B. Holm P6 The eAcademy for Tay-Sachs & Sandhoff disease app Daniel Lewi, Patricia Durao P10 The role of a patient organisation in driving the research agenda in a rare disease Heather Band, Andrea West P13 Expertise for rare diseases mapped Marinda J.A. Hammann, Marije C. Effing-Boele, Hanka K. Dekker P14 The hidden costs of rare diseases: a feasibility study Amy Hunter, Amy Simpson P15 FDA’s new natural history grant program: support to build a solid foundation for development of products for rare diseases Gumei Liu, Katherine Needleman, Debra Lewis, Gayatri Rao P17 Understanding the wider impact of adrenal insufficiency: patient organisation involvement in the TAIN project Amy Simpson, Amy Hunter, Martin J Whitaker P20 Bridging the gaps between medical and social care for people living with a rare disease Raquel Castro

The aim of this pilot study was to obtain accurate and valid data on how much time social workers spend on their different activities in the home-care programme. Data collection required two steps. Beginning with a list of social-work activities was developed and validated. The final list consisted of 75 activities in four main categories: direct activities, indirect activities, non-clinical activities and personal time. The list was programmed in TEDDI (French acronym for clinician time and motion) a software running on a handheld computer to carry out continuous-time-and-motion through self-reporting. Secondly, eight social workers used TEDDI for 12 days: 2632 activities and 94 working days were analysed. Analysis revealed that 68% of the total time was allocated to direct (19%) and indirect activities (49%), 16% to non-clinical activities and 16% to personal time. The social workers spent 14.3% of their time with the older person and 4.5% with the older person’ families; 14.2% of social worker time was...

A Delphi-type expert consultation founded on the RAND/UCLA Appropriateness method was used to select variables related to older adults and environment characteristics perceived essential in assessing psychosocial needs and that could influence the social work workload in home care services. After two rounds of consultation, the 60 experts reached a consensus on 97 variables out of the 160 considered. A focus group made up of 10 experts identified tools that would allow us to measure the variables in a clinical context. Eighty-three percent of the variables selected could be measured with five instruments identified by the focus group experts.

BackgroundIn Europe and Asia, long-term care funding is disability-based. This introduces a perverse effect by inappropriately adding value to functional decline among beneficiaries. To support the efforts in prevention and rehabilitation made by personnel in long-term care services, indicators have to be developed to promote functional improvement of beneficiaries. As people receiving those services are already experiencing a functional decline process, it is essential to know the natural magnitude of functional decline in order to assess deviation from this expected decline. The objective of the study was to estimate the natural decrease of autonomy in beneficiaries of home care services and nursing homes.MethodsTwo databases were used: for home-dwelling people, 1235 subjects over 75years old who participated in the PRISMA study; for institutions, 1330 residents over 65years old of a nursing home in Sherbrooke (QC, Canada). These subjects were assessed several times over many years with the Functional Autonomy Measurement System (SMAF). Growth analyses were used to estimate the annual decrease in the SMAF score according to age, gender and the initial autonomy status.ResultsAt home, only age was significantly associated with the slope of functional decline. The average annual decrease of subjects 75–84years old was 2.4 points on the SMAF score (out of 87); for those aged over 85, the annual loss was 3.8 points. In institutions, gender and the initial autonomy profile were associated with the annual decrease. For men, the annual decrease varied between 0.7 for the most disabled subjects to 5.2 for the most autonomous. For women, those values varied from 0.2 to 6.6, respectively.ConclusionA decrease in the SMAF score less than these expected values should be associated with a bonus to support personnel training, prevention activities, rehabilitation and activities aimed at supporting the autonomy of the beneficiaries. Such a strategy requires the implementation of a precise and reliable assessment instrument like the SMAF and also the availability of a longitudinal database where data for each beneficiary could be linked over time.RésuméPosition du problèmeLes systèmes de financement des soins à long terme en Europe et en Asie sont basés sur les incapacités des usagers. Cela introduit un effet pervers en valorisant de façon indue la perte d’autonomie des usagers. Afin de soutenir les efforts des intervenants et des services en matière de prévention et de réadaptation, des indicateurs permettant de valoriser l’amélioration fonctionnelle doivent être développés. Comme les usagers âgés sont déjà en processus de perte d’autonomie, il est nécessaire de connaître l’évolution naturelle de l’autonomie fonctionnelle pour apprécier la déviation par rapport à cette perte attendue. L’objectif de cette étude est de déterminer la perte annuelle d’autonomie chez des usagers vivant à domicile et en institution.MéthodeDeux bases de données ont été utilisées : pour le domicile, les 1235 sujets de plus de 75ans de l’étude PRISMA ; pour l’institution, les 1330 usagers de plus de 65ans d’un centre d’hébergement de Sherbrooke (Québec, Canada). Ces sujets ont été évalués à plusieurs reprises sur une période de plusieurs années au moyen du Système de mesure de l’autonomie fonctionnelle (SMAF). Des analyses de courbes d’évolution (growth analyses) ont permis de définir la perte annuelle selon l’âge, le sexe et le profil d’autonomie initial.RésultatsÀ domicile, seul l’âge intervient dans la pente de la perte d’autonomie. La perte annuelle des personnes de 75 à 84ans peut être estimée à 2,4 points du score SMAF (sur 87) alors que celle des 85ans et plus est de 3,8 points. En institution, tant le sexe que le profil initial d’autonomie ont une influence sur la perte annuelle. Pour les hommes, elle varie de 0,7 pour les sujets les moins autonomes à 5,2 pour les personnes les plus autonomes. Pour les femmes, ces valeurs varient de 0,2 à 6,6.ConclusionUne perte inférieure à ces différences de scores devrait être associée à un bonus pour soutenir la formation du personnel, les activités de prévention et de réadaptation ainsi que des activités de soutien à l’autonomie. Une telle stratégie nécessite l’implantation dans les services d’un outil sensible et reproductible comme le SMAF, de même que la disponibilité d’une base de données dans laquelle les évaluations successives des usagers peuvent être reliées entre elles.

To compare the effectiveness of supervised Tai Chi exercises versus the conventional physical therapy exercises in a personalized rehabilitation program in terms of the incidence and severity of falls in a frail older population.The participants were frail older adults living in the community, admitted to the day hospital program in Sherbrooke, Quebec, Canada (n = 152). They were randomized to receive a 15-week intervention, either by supervised Tai Chi exercises (n = 76) or conventional physical therapy (n = 76). Fall incidence and severity were assessed using both the calendar technique and phone interviews once a month during 12 months following the end of the intervention. Other variables were collected at baseline to compare the two groups: age, comorbidity, balance, sensory interaction on balance, and self-rated health.Both interventions demonstrated a protective effect on falls but Tai Chi showed a greater one (RR = 0.74; 95% CI = 0.56-0.98) as compared to conventional physical therapy exercises.Supervised Tai Chi exercises as part of a rehabilitation program seem to be a more effective alternative to the conventional physical therapy exercises for this specific population.

Le projet d'Assurance autonomie (AA) visait a introduire une assurance publique des soins de longue duree dans le systeme de sante et de services sociaux du Quebec. Developpe a partir d'une revue des assurances de ce type implantees ailleurs dans le monde, ce projet a fait l'objet de travaux intensifs pour l'operationnaliser dans le contexte quebecois. Le projet s'appuyait sur des acquis du systeme quebecois : la presence de gestionnaires de cas charges de l'evaluation et du suivi des personnes âgees dans le cadre de reseaux integres de services, un outil d'evaluation standardise permettant la classification des individus en 14 profils associes a une intensite de services requis et un systeme d'information. Suite a l'evaluation du besoin de l'usager et a la determination du profil, une allocation de soutien a l'autonomie peut donc etre attribuee et servir a financer les services publics ou a acheter des services a des organismes prives et communautaires. Le financement de l'AA etait assure par les impots via un programme budgetaire specifique dedie. Tous les aspects legaux, administratifs, financiers et informatiques lies a ce projet ont ete traites par les autorites ministerielles. Le livre blanc fut bien accueilli par les parties interessees en commission parlementaire et le projet de loi creant l'AA a ete depose a l'Assemblee nationale en decembre 2013. Des elections precipitees ont toutefois provoque la mort du projet. The goal of the proposal for Long-term Care Insurance was to implement public coverage for long-term care into the health and social services system in Quebec. Based on a review of similar schemes implemented in other countries, this proposal led to intensive efforts for contextualization and operationalization. The proposal built on what already existed in the Quebec system: the availability of case managers in charge of assessing and following the elderly within the integrated services networks, a standardized assessment tool for the classification of individuals into 14 categories (« profils ») each associated with a level of intensity of services needed, and an information system. The assessment of individuals' needs and their assignment to a category of need (« profil ») lead to the determination of a benefit to support autonomy (ASA in French). The ASA could be used to receive services provided by public organizations or to buy private and/or community services. The scheme was to be financed out of taxes, through an earmarked fund. All legal, administrative and financial components, as well as the necessary information system associated with the proposal had been dealt with by competent Ministries. The White Book was well received by all stakeholders to a parliamentary commission and the bill was tabled at the National Assembly in December 2013. The bill was killed, however, by an early election.

Blocks of strongly foliated garnet- and clinopyroxene-bearing amphibolites have recently been discovered in the Saga ophiolitic melange, South Tibet. The Saga ophiolitic melange is a sheared serpentinite matrix melange that crops out along the Yarlung Zangbo Suture Zone (YZSZ), South Tibet. The YZSZ is the youngest and the southernmost of all sutures stretching across the Tibetan Plateau and contains the remnants of the Neo-Tethys ocean that once separated India from the Lhasa block. The garnet- and clinopyroxene-bearing amphibolite blocks are interpreted as parts of a dismembered sub-ophiolitic metamorphic sole. They are made mainly of hornblende, diopside and garnet and were strongly metasomatized during retrogression. Thermobarometry and 40 Ar/ 39 Ar dating on hornblende indicate that they were metamorphosed to peak conditions in excess of 12 kbar and 850 °C between 132 and 127 Ma. Major and trace element geochemistry suggest an N- to E-MORB-type protolith, although a back- or inter-arc basin setting cannot be ruled out. This data supports a model in which the back-arc YZSZ ophiolites (central segment) were trapped in a fore-arc setting by the inception of a subduction at the back-/inter-arc ridge. The cause of this important Early Cretaceous tectonic event might be the presence of an oceanic plateau or hot-spot tracks in the Neo-Tethys, the collision of the Lhasa and Qiangtang blocks in the North and/or the onset of northward movement of the Indian continent in the South. The proposed conceptual model provides an explanation for the absence (or rarity) of Late Cretaceous ophiolites along the YZSZ which are mostly of Late Jurassic to Early Cretaceous age.

The purpose of this first synthesis is to summarize findings on the Yarlung Zangbo Suture Zone (YZSZ) ophiolites and discuss still remaining problems. The YZSZ studied for almost 30 years and is the youngest of the sutures recognized on Tibet Plateau. It is now acknowledged that the YZSZ is a complex assemblage of sedimentary, metamorphic and igneous rocks created during and shortly after the collision between India and Eurasia. The ages of the various lithologies span a time interval from the Jurassic to the Middle Miocene, with some Permian and Devonian exotic blocks from melange zone. The YZSZ is characterized by ophiolitic complexes and ophiolitic melange. The ophiolites are of two types: non dismembered and dismembered sections. The non disturbed sections, although tectonically reworked, are observed along the segment from Dazhuqu to Jiding in Xigaze area and Spontang ophiolite. The dismembered sequences are found in various locations such as Nidar, Kiogar, Jungbwa, Saga, Sangsang, Xigugabu, and Luobusa. The incomplete stratigraphic log could be connected to intraoceanic or orogenetic origins. The ophiolites are distributed into two groups of ages: the Luobusa, Zedang and Kiogar sequences being Jurassic-Lower Cretaceous whereas all other sequences are of Lower Cretaceous age. Compilation of geochronological data suggest that some ophiolite sequences might have evolved for over more than 70 My from their initial genesis to obduction which occurred around 70–90 My ago. Ophiolites differ in terms of petrological and geochemical aspects however, they were all generated in suprasubduction zone and more specifically in arc (few fore-arc) and back-arc settings. Synthesis of more than 700 geochemical analyses show variable mixing of components from N-MORB-type to IAT-CAB and to OIB end-members. The Jurassic ophiolites show the maximum of arc component while the Lower Cretaceous ones show little to strong mixing. In addition, most ophiolites were created in short lived (30 My) basins and generated close to the Eurasiatic continental margin. We propose that Ladakh–Tibet ophiolites were generated in a suprasubduction context similar to Mariana arc, interarc and back-arc or Tonga–Lau system. The variable arc signature of these ophiolites is directly related to their initial position within the suprasubduction system.

We have discovered diffuse warm air vents at the surface of a chrysotile milling waste heap at the Black Lake mine, Thetford Mines, Quebec, Canada. The venting areas are inconspicuous, except in winter when the vents form snow-free areas of unfrozen ground, each with a surface area of 1–15 m 2 . The temperature and chemical composition of the warm air vents have been monitored from March 2009 to July 2010. The temperature of the warm air and ground surface at the venting sites ranged from 6.6 to 20.0 °C, whereas that of the ambient air ranged from −13.2 to 20.0 °C. The difference between atmospheric and vent air temperatures is greater in cold-weather months. The warm air has low CO 2 content, but has otherwise normal atmospheric gas composition. Warm air volumetric flow varies from 2.1 to 19.9 L/m 2 /s in winter, when it contains between 2 . In summer, the venting areas are more diffuse, with volumetric flow rates ranging from 0.5 to 1.5 L/m 2 /s, and are less depleted in CO 2 (260–370 ppm). Frozen ground is likely focusing airflow in winter compared to summer. We present a conceptual model in which air enters the steep flanks of the chrysotile milling waste heap, into which CO 2 reacts with Mg-rich minerals, stripping CO 2 from air by exothermic mineral carbonation reactions. Considering the surface area of summer and winter venting areas, flow rates, and concentration of CO 2 in warm air vents, we estimate that the Black Lake mine heap passively captures at least 0.6 kt CO 2 per year.

The aging population and the epidemic of chronic diseases requires an accompanying finance reform of long-term care that will become increasingly dominant. Many countries have faced this situation and have set up a separate public funding for such care on the basis of a universal insurance covering both home care and institutions. Canada and Quebec must adopt such autonomy insurance and create a separate fund financed partly by a more judicious use of current budgets and tax credits, and also by a significant investment in home care. An autonomy support benefit could be allocated in kind to fund public services and by contract to pay for services delivered by private, voluntary, and social economy agencies. This benefit would be established following a standardized assessment of functional autonomy achieved by the case manager who will manage the services and control their quality.