Browsing by Author "Smith, Christopher"
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Item Open Access Exploring patient perspectives on EQ-5D-5L data visualization within an individualized decision aid for total knee arthroplasty (TKA) in Alberta, Canada(2024-02-29) Johnson, Jeffrey A.; Itiola, Ademola; Rahman, Shakib; Smith, Christopher; Soprovich, Allison; Wozniak, Lisa A.; Marshall, Deborah A.Abstract Background Decision aids can help patients set realistic expectations. In this study, we explored alternative presentations to visualise patient-reported outcomes (EQ-5D-5L) data within an online, individualized patient decision aid for total knee arthroplasty (TKA) that, in part, generates individualized comparisons based on age, sex and body mass index, to enhance usability prior to implementation into routine clinical practice. Methods We used data visualization techniques to modify the presentation of EQ-5D-5L outcomes data within the decision aid. The EQ-5D-5L data was divided into two parts allowing patients to compare themselves to similar individuals (1) pre-surgery and (2) 1-year post-surgery. We created 2 versions for each part and sought patient feedback on comprehension, usefulness, and visual appeal. Patients from an urban orthopedic clinic were recruited and their ratings and comments were recorded using a researcher-administered checklist. Data were managed using Microsoft Excel, R version 3.6.1 and ATLAS.ti V8 and analyzed using descriptive statistics and directed content analysis. Results A total of 24 and 25 patients participated in Parts 1 and 2, respectively. Overall, there was a slight preference for Version 1 in Part 1 (58.3%) and Version 2 in Part 2 (64%). Most participants demonstrated adequate comprehension for all versions (range 50–72%) and commented that the instructions were clear. While 50–60% of participants rated the content as useful, including knowing the possible outcomes of surgery, some participants found the information interesting only, were unsure how to use the information, or did not find it useful because they had already decided on a treatment. Participants rated visual appeal for all versions favorably but suggested improvements for readability, mainly larger font and image sizes and enhanced contrast between elements. Conclusions Based on the results, we will produce an enhanced presentation of EQ-5D-5L data within the decision aid. These improvements, along with further usability testing of the entire decision aid, will be made before implementation of the decision aid in routine clinical practice. Our results on patients’ perspectives on the presentation of EQ-5D-5L data to support decision making for TKA treatments contributes to the knowledge on EQ-5D-5L applications within healthcare systems for clinical care.Item Open Access Identifying Novel Causes of Human Neuromuscular Disease(2016) Smith, Christopher; Parboosingh, Jillian; Innes, A. Micheil; Lamont, Ryan; Huang, PengNeuromuscular diseases (NMDs) are a class of disorders that affect the peripheral nervous system or muscle. These conditions generally result in the loss of voluntary control of movement. They are often genetic, follow Mendelian inheritance, and to date more than 500 causative genes have been identified. Clinical and genetic heterogeneity make correct and specific diagnosis challenging. Identifying novel disease genes will likely improve diagnostic rates, especially as the use of genome scale sequencing techniques in clinical diagnostics increases. Exome sequencing is an extremely powerful tool in Mendelian disease gene discovery. We have leveraged the power of whole exome sequencing in a cohort of 16 individuals with disparate NMDs to: identify novel candidate disease genes (IARS, MSTO1, RAB11FIP2, RNMT), validate previously identified candidate disease genes (MYH14, TAF1, COQ7), propose expansions to the recognized clinical phenotypes of known genes (GLE1, DOK7), and in collaboration with clinical geneticists provide diagnosis to participant patients.Item Open Access Paradoxes in Paradise: Neoliberalism in Alberta's Developmental Disability Field(2016) Sonpal-Valias, Nilima; Langford, Thomas; Seel, Keith; Smith, Christopher; Harrison, Trevor; Este, DavidThis research examines the manifestation of neoliberal reforms and their institutionalising processes and effects in the field of services for adults with developmental disabilities in Alberta. The goal is to contribute to emerging understandings of how neoliberalism shapes the environmental context and characteristics of nonprofit human service organizations. A longitudinal embedded single-case study design and historical research approach are used. The study is grounded in a social constructivist perspective, guided by a theoretical framework integrating organizational and historical institutionalism with resource dependence theory. To understand the origins of the institutional arrangements existing at the start of the reforms, the evolution of the field is traced from 1905 to the 1990s. Four critical junctures are identified during this period, associated with: the eugenics movement; the deinstitutionalization and normalization movements; the social model of disability; and the onset of neoliberalism. The thesis identifies the broader socio-cultural, economic and political contexts in which the developments occurred. Neoliberal reforms, which intensified when the Klein government came into power in 1992, manifested in Alberta’s developmental disability field in four main ways: program cutbacks and limitations; a new structure for program delivery; increased family and individual responsibility; and managerial techniques for scrutiny and accountability. The thesis reveals poignant differences in the unfolding of the reforms, the identity and role of central actors, the levels and forms of acceptance, resistance, and entrepreneurship exhibited by various actors to shape institutional changes, and the nature and extent of change achieved. Organizations demonstrated isomorphic properties and tendencies expected in a highly institutionalised context, but their responses were diverse, structured by their histories, cultures and sense of self-identity, professional biases, and perceptions of dependencies. Even in a province much touted for neoliberalism, the reforms did not roll out coherently, and only partially achieved the benchmark principles of neoliberal government. Neoliberalism’s inherent paradoxes, a multiplex institutional context, and the creative agencies of strategic actors are implicated in the contradictory and experimental nature of the outcomes.Item Open Access William John Birkbeck and anglo-Russian relations, 1790-1916(2004) Smith, Christopher; Peers, Douglas M.