Évaluation de l’impact des services en téléobstétrique du RUIS McGill offerts à une population de femmes inuites avec grossesse à risque élevé habitant sur la côte de la baie d’Hudson au Nunavik

L’accessibilité à des soins de santé pour une population habitant une région éloignée au Québec représente un défi de taille pour le Ministère de la santé et des services sociaux. Des solutions, telles que la télésanté, ont été présentées afin de pallier ce problème. Le RUIS McGill a ainsi développé un programme de téléobstétrique afin de desservir une population de femmes inuites à grossesse à risque élevé (GARE) habitant le Nunavik. L’objectif de ce mémoire fut de comprendre l’impact du service de téléobstétrique du RUIS McGill sur la santé des femmes et de leur nouveau-né ainsi que sur les coûts de santé et l’utilisation des services suite à son implantation au Centre de santé et de services sociaux Inuulitsivik sur la côte de la baie d’Hudson. Les femmes inuites à grossesse à risque élevé et leurs enfants de la région de la baie d’Hudson du Nunavik, éloignés des services obstétriques spécialisés, sont visés. Le service de téléobstétrique permet un accès aux obstétriciens du RUIS McGill localisés à Montréal. Un devis quasi-expérimental est utilisé pour examiner trois hypothèses portant sur l’état de santé des mères et des enfants, sur l’utilisation des services de santé et sur leurs coûts. Le service de téléobstétrique est devenu fonctionnel en 2006, offrant la possibilité de constituer une étude avant-après à deux groupes de femmes, soit celles ayant accouché avant 2006 (prétest) et celle ayant accouché après 2012 (post-test). La collecte de donnée se fit, dans son intégralité, par l’entremise des dossiers médicaux papier des participantes permettant l’analyse de 47 dossiers pour le prétest et de 81 dossiers pour le post-test. L’exécution d’analyse de covariance, de régression logistique et du test non paramétrique de Mann-Witney permit de conclure que le prétest et le post-test ne différent que sur deux variables, soient le poids à la naissance, plus faible dans le post-test et la pression artérielle de la mère à la naissance, plus élevée dans le post-test. Pour l’ensemble des autres variables portant sur les trois hypothèses à l’étude, les résultats de ce mémoire ne démontrent aucune différence significative entre les deux groupes démontrant ainsi qu’une même qualité de soins a été conservée suite à l’implantation du programme de téléobstétrique. Sur la base des résultats, ce mémoire recommande de revoir et modifier les objectifs du programme; de partager les bornes de communication de télésanté avec d’autres spécialités; d’entreprendre une évaluation du programme axée sur les coûts; de suivre rigoureusement l’utilisation du programme pour en maximiser l’efficacité et le potentiel; d’établir un tableau de bord; et d’entreprendre une étude évaluative comparative dans un service de téléobstétrique comparable.Health care accessibility to the population located in a remote region of Quebec represents a challenge for the Ministère de la santé et des services sociaux. Solution such as telemedicine has been used to mitigate this issue. Therefore RUIS McGill has developed a teleobstetric program helping Inuit women in Nunavik with their risky pregnancy. This thesis’s objective is to understand the impact of the RUIS McGill teleobstetric program on the mother and her new born health plus the cost and utilization of health services following its implementation in the Inuulitsivik Health & and Social Services Centre located on Hudson Bay Shore. Inuit women at high risk pregnancy and their children in the region of Nunavik's Hudson Bay, who are far away from specialist in obstetric, are targeted. The teleobstetric program provides access to the RUIS McGill obstetricians located in Montreal. A quasi- experimental design was used to examine three hypotheses about the mothers and their children health, the use of health services and their costs. The teleobstetric program became operational in 2006, providing the ability to be a before-after study with two groups of women, those who delivered before 2012 (pre-test) and those who delivered after 2006 (post-test). The data collection took place, in its entirety, through paper medical records of the participants allowing the analysis of 47 cases for the pre-test and 81 cases for the post-test. Variance and covariance’s analysis, logistical regression and the non-parametric Mann-Witney test has allowed to conclude that the pre-test and post-test are different for only two variables which is the weight at birth, lower in the post-test and for the blood pressure of the mother at birth, higher in the post-test. For all other variables based on the three hypothesis of this thesis, results show no significate difference between pre-test and post-test, illustrating that the same level of quality has been conserved after the implementation of the teleobstetric program. Based on results, this thesis recommends reviewing and modifying the program’s objectives; sharing telehealth communication terminals with other specialties; undertaking an assessment of the cost-based program; strictly monitor the use of the program to maximize efficiency and potential; establishing a dashboard; and undertaking a comparative evaluation study in a comparable teleobstetric service

Using ABC narrative recording to identify the function of problem behavior: a pilot study

Many professionals report using ABC narrative recording to identify the function of problem behavior in children with developmental disabilities, but research has not established whether their analyses yield valid results. Thus, the purpose of this study was to examine whether the function identified by expert reviewers using ABC narrative recordings would match the one identified by a functional analysis (FA) and the Questions About Behavioral Function (QABF) scale in four children with developmental disabilities. The functions identified by all twelve experts using the ABC narrative recordings matched at least one of the functions identified by the FA for three of four participants. The experts’ analyses also agreed with the informant-based assessment at a statistically significant level for two of three participants with a conclusive QABF. Altogether, the results suggest that ABC narrative recording may be useful to generate hypotheses to identify the function of problem behavior, but that more research is needed before recommending its use as a standalone functional behavior assessment

Initial validation of the Brief Assessment of Service Satisfaction in Persons with an Intellectual Disability (BASSPID)

Individuals with an intellectual disability often require intensive services to promote their social participation to the fullest extent. As such, measuring satisfaction with these services appears essential to enhance the quality of life of individuals with an intellectual disability and to improve service delivery within agencies. Thus, the purpose of the study was to conduct an initial validation of the Brief Assessment of Service Satisfaction in Persons with an Intellectual Disability (BASSPID), a 15-item questionnaire designed to assess service satisfaction. To examine the structure, reliability, and validity of the BASSPID, we interviewed 98 individuals with an intellectual disability and 23 parents. Overall, the BASSPID contained one scale, which had strong content and convergent validity as well as items easily understandable for individuals with an intellectual disability. Furthermore, the questionnaire had good internal consistency and adequate test-retest reliability. However, parents generally overestimated the perceived satisfaction of their child. The study suggests that the BASSPID may be useful to assess the satisfaction of individuals with an intellectual disability, but more research is needed to examine its potential impact on improving service quality

Best Practices in the Clinical Management of Progressive Supranuclear Palsy and Corticobasal Syndrome: A Consensus Statement of the CurePSP Centers of Care.

Progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS; the most common phenotype of corticobasal degeneration) are tauopathies with a relentless course, usually starting in the mid-60s and leading to death after an average of 7 years. There is as yet no specific or disease-modifying treatment. Clinical deficits in PSP are numerous, involve the entire neuraxis, and present as several discrete phenotypes. They center on rigidity, bradykinesia, postural instability, gait freezing, supranuclear ocular motor impairment, dysarthria, dysphagia, incontinence, sleep disorders, frontal cognitive dysfunction, and a variety of behavioral changes. CBS presents with prominent and usually asymmetric dystonia, apraxia, myoclonus, pyramidal signs, and cortical sensory loss. The symptoms and deficits of PSP and CBS are amenable to a variety of treatment strategies but most physicians, including many neurologists, are reluctant to care for patients with these conditions because of unfamiliarity with their multiplicity of interacting symptoms and deficits. CurePSP, the organization devoted to support, research, and education for PSP and CBS, created its CurePSP Centers of Care network in North America in 2017 to improve patient access to clinical expertise and develop collaborations. The directors of the 25 centers have created this consensus document outlining best practices in the management of PSP and CBS. They formed a writing committee for each of 12 sub-topics. A 4-member Steering Committee collated and edited the contributions. The result was returned to the entire cohort of authors for further comments, which were considered for incorporation by the Steering Committee. The authors hope that this publication will serve as a convenient guide for all clinicians caring for patients with PSP and CBS and that it will improve care for patients with these devastating but manageable disorders

Tracking Species Recovery Status to Improve Endangered Species Act Decisions

The U.S. Endangered Species Act (ESA) protects over 2,000 species, but no concise, standardized metrics exist for assessing changes in species recovery status. Tracking these changes is crucial to understanding species status, adjusting conservation strategies, and assessing the performance of the ESA. We helped develop and test novel metrics that track changes in recovery status using six components. ESA 5-year status reviews provided all of the information used to apply the recovery metrics. When we analyzed the reviews, we observed several key challenges to species recovery. First, the reviews lack a standardized format and clear documentation. Second, despite having been listed for decades, many species still lack basic information about their biology and threats. Third, many species have continued to decline after listing. Fourth, many species currently have no path to recovery. Applying the recovery metrics allowed us to gain these and other insights about ESA implementation. We urge the U.S. Fish and Wildlife Service to adopt the metrics as part of future status reviews in order to inform public discourse on improving conservation policy and to systematically track the recovery progress of all ESA species