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We developed a clinical care pathway for the detection and management of frailty for older adults living in long-term care (LTC) homes.
Methods
We utilized a modified Delphi with residents of LTC homes experiencing frailty, their caregivers, and care providers. The pathway was created using existing literature and input from key LTC experts.
Findings
Fifty-two panelists completed round one of the Delphi, and 55.8% of these respondents completed round two. Both rounds had high agreement and ratings. We added six new statements following analysis of round two, and 15 statements were modified/updated to reflect panelist feedback. The final pathway included 28 statements and promotes a resident-centered approach that highlights caregiver involvement and inter-professional teamwork to identify and manage frailty, as well as initiate palliative care earlier.
Conclusion
Implementing this pathway will allow health care providers to adopt screening measures and adapt care to a resident’s frailty severity.
Spinal muscular atrophy (SMA) is characterized by the progressive loss of motor neurons causing muscle atrophy and weakness. Nusinersen, the first effective SMA therapy was approved by Health Canada in June 2017 and has been added to the provincial formulary of all but one Canadian province. Access to this effective therapy has triggered the inclusion of SMA in an increasing number of Newborn Screening (NBS) programs. However, the range of disease-modifying SMN2 gene copy numbers encountered in survival motor neuron 1 (SMN1)-null individuals means that neither screen-positive definition nor resulting treatment decisions can be determined by SMN1 genotype alone. We outline an approach to this challenge, one that specifically addresses the case of SMA newborns with four copies of SMN2.
Objectives:
To develop a standardized post-referral evaluation pathway for babies with a positive SMA NBS screen result.
Methods:
An SMA NBS pilot trial in Ontario using first-tier MassARRAY and second-tier multi-ligand probe amplification (MLPA) was launched in January 2020. Prior to this, Ontario pediatric neuromuscular disease and NBS experts met to review the evidence regarding the diagnosis and treatment of children with SMA as it pertained to NBS. A post-referral evaluation algorithm was developed, outlining timelines for patient retrieval and management.
Conclusions:
Ontario’s pilot NBS program has created a standardized path to facilitate early diagnosis of SMA and initiation of treatment. The goal is to provide timely access to those SMA infants in need of therapy to optimize motor function and prolong survival.
Spinal muscular atrophy (SMA) is a devastating rare disease that affects individuals regardless of ethnicity, gender, and age. The first-approved disease-modifying therapy for SMA, nusinursen, was approved by Health Canada, as well as by American and European regulatory agencies following positive clinical trial outcomes. The trials were conducted in a narrow pediatric population defined by age, severity, and genotype. Broad approval of therapy necessitates close follow-up of potential rare adverse events and effectiveness in the larger real-world population.
Methods:
The Canadian Neuromuscular Disease Registry (CNDR) undertook an iterative multi-stakeholder process to expand the existing SMA dataset to capture items relevant to patient outcomes in a post-marketing environment. The CNDR SMA expanded registry is a longitudinal, prospective, observational study of patients with SMA in Canada designed to evaluate the safety and effectiveness of novel therapies and provide practical information unattainable in trials.
Results:
The consensus expanded dataset includes items that address therapy effectiveness and safety and is collected in a multicenter, prospective, observational study, including SMA patients regardless of therapeutic status. The expanded dataset is aligned with global datasets to facilitate collaboration. Additionally, consensus dataset development aimed to standardize appropriate outcome measures across the network and broader Canadian community. Prospective outcome studies, data use, and analyses are independent of the funding partner.
Conclusion:
Prospective outcome data collected will provide results on safety and effectiveness in a post-therapy approval era. These data are essential to inform improvements in care and access to therapy for all SMA patients.
The Spacewatch Project uses four telescopes of apertures 0.9-m, 1.8-m, 2.3-m, and 4-m on Kitt Peak mountain in Arizona for followup astrometry of priority NEOs. Objects as faint as V=23 on the MPC's NEO Confirmation Page, targets of radar, potential impactors, targets of spacecraft observations or visits, and PHAs with future close approaches to Earth receive priority for astrometry.
War between states has been accepted as the only legitimate form of violence as long as states have existed. In pre-1914 Europe recourse to war was recognized by statesmen as a normal and acceptable instrument of policy and diplomacy – an extension of politics by other means, in the famous formulation of Clausewitz. In the twentieth century, however, the character of war was transformed. Wars were waged with unprecedented savagery: the rules of war formulated over centuries and codified in The Hague Conventions of 1899 and 1907 were ignored as states abandoned the notion of limited war in favour of all-out, ‘total’ or ‘apocalyptic’ war, pursued for ideological ends. Herbert Butterfield, Regius Professor of Modern History at Cambridge University, characterized each of the two world wars as ‘a war for righteousness’, which he defined as a war ‘in which the conflict of right and wrong admitted of no relenting’. In this regard, Butterfield contended, the total wars of the twentieth century recalled the wars of religion of the sixteenth and seventeenth centuries which statesmen and political thinkers since the Enlightenment had viewed with horror as an affront to civilization. The deadliest features of twentieth-century warfare, according to Butterfield, were the product not of modern technology but of a theory of war which eschewed all restraint or limits. Hatred, viciousness, a refusal to compromise – these were the characteristics of the modern ‘war for righteousness’, conferring on conflict what Butterfield called a ‘daemonic’ quality.
The relationship between church, state and nation in nineteenth-century France was shaped in large measure by the legacy of the preceding revolutionary era. The French Revolution had begun with the blessing of the church but it ended in a seismic rupture. Whereas the clergé patriote of 1789 had looked to religion to bind the nation together, within a few years religion had developed into the single greatest source of national discord. The Jacobins proclaimed the Republic one and indivisible, but their onslaught on Catholic Christianity in effect turned France into not one nation, but two.
On one side of the fault-line lay those who continued to identify with the revolutionary idea of the sovereignty of the people, to be realised in the construction of a new kind of polity, the liberal or democratic nation-state. On the other were those who refused to embrace a social order which did not rest on religious foundations and who still thought of France as the Christian nation par excellence, the eldest daughter of the church, the creation of a Christian monarchy best exemplified by St Louis. The Revolution thus bequeathed to the nineteenth century a mythic vision of a culture war’ between les deux France which would last throughout the nineteenth century, and even beyond, though only after 1879 would it once again involve hostile action on the part of a republican state against the forces of organised religion.
‘Clericalism? That's the enemy!’ Gambetta's battle cry, hurled in a celebrated speech to the Chamber of Deputies on 4 May 1877, has rightly come to be seen as the declaration of war which heralded the onset of the French Kulturkampf, a struggle between the Third Republic and the Catholic church which lasted between 1879 and 1905 and was characterised by the enactment of two major programmes of anticlerical legislation, one between 1879 and the mid-1880s, the other at the turn of the century, the culmination of which was the complete separation of church and state in 1905. The legislative culture war has been studied many times, and will not be re-examined in this chapter. The focus here, rather, is on the culture war on the ground, in order to demonstrate that the culture war was fought not just between a bourgeois intelligentsia (republican and Catholic) in the forum of parliament and the national press but also involved ordinary people, both villagers and priests, in obscure corners of provincial France. The chapter seeks to show further that the late nineteenth-century conflict was only a particular phase – albeit the most decisive one – in a much longer-running guerre des deux Frances, or ‘war of the two Frances’. The French culture war was in many respects a kind of ‘cold'war which periodically irrupted into ‘hot’ war, as in the Breton guerre scolaire (‘battle of the schools’), which provides our case study.
Joan of Arc died at the stake in Rouen in 1431. She became a canonized saint of the Catholic Church only in 1920. It is well known that the wheels of the Vatican grind slowly, but 500 years is a long period to wait for sanctity, even by Roman standards. Obviously, in a short communication such as this, there is no time to explore the rich afterlife which Joan enjoyed between her death and her canonization. Rather, the more modest purpose of this paper is to show how her achievement of canonical status was preceded by a well-orchestrated campaign conducted by French Catholics during the late nineteenth and early twentieth centuries. If Joan was finally reclaimed as a Catholic saint and martyr, it was primarily because she was successfully represented as the very epitome of a heady blend of religion and nationalism that was one of the more distinctive and powerful forces of the era of the belle époque and the First World War.
This lecture should also have a sub-title, perhaps something like ‘a study in ambiguity’, because I want to use it as a particular example of the great paradox which seems to lie at the core of the relationship between women and the Church. On the one hand, as is well known, most varieties of Christianity have been marked by a more or less powerful misogynist strain which, understandably, has been the focus for feminist denunciations of the Church as one of the principal enemies of women’s rights. On the other hand, as ecclesiastical historians perhaps know better than others, Christianity cannot be viewed crudely as a force invariably responsible for women’s oppression, since from its beginnings it has proved itself specially attractive to women, allowing them to find inner peace and deep fulfilment through Church-related activities. I hope to show tliat the history of women’s involvement in the social Catholic movement in France in the period before the First World War is a perfect illustration of the paradoxical situation in which, within the framework of a potentially restrictive Christian discourse, women have been able to make a distinctive contribution both to their religion and to society in general.