51 Result(s)
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Deborah A. Marshall
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Article
Open AccessStudying How Patient Engagement Influences Research: A Mixed Methods Study
There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research proce...
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Open AccessKey ingredients for successful collaboration in health research: perspectives of patient research partners
There are increasing publications on meaningful collaboration between researchers and patient research partners (PRPs), but fewer publications of such work from the PRP perspective using an evaluation framewor...
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Open AccessExploring patient perspectives on EQ-5D-5L data visualization within an individualized decision aid for total knee arthroplasty (TKA) in Alberta, Canada
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 dec...
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Stated-Preference Survey Design and Testing in Health Applications
Following the conceptualization of a well-formulated and relevant research question, selection of an appropriate stated-preference method, and related methodological issues, researchers are tasked with develop...
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Experiences of Irritable Bowel Syndrome Patients in a Virtual Yoga Program: Qualitative Findings from a Clinical Trial
In-person yoga interventions have shown feasibility and effectiveness in improving the outcomes of patients with irritable bowel syndrome (IBS), but experiences in virtual yoga interventions have not been exam...
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Article
Are We Capturing the Socioeconomic Burden of Rare Genetic Disease? A Sco** Review of Economic Evaluations and Cost-of-Illness Studies
Rare diseases have a significant impact on patients, families, the health system, and society. Measuring the socioeconomic burden is crucial to valuing interventions for rare diseases. Healthcare system costs ...
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What matters most to pediatric rheumatologists in deciding whether to discontinue biologics in a child with juvenile idiopathic arthritis? A best-worst scaling survey
Care for JIA patients has been transformed in the biologics era; however, biologics carry important (although rare) risks and are costly. Flares after biological withdrawal are seen frequently, yet there is li...
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Open AccessBarriers experienced by families new to Alberta, Canada when accessing routine-childhood vaccinations
As Canada and other high-income countries continue to welcome newcomers, we aimed to 1) understand newcomer parents’ attitudes towards routine-childhood vaccinations (RCVs), and 2) identify barriers newcomer p...
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Open AccessWithdrawing biologics in non-systemic JIA: what matters to pediatric rheumatologists?
Approximately one third of children with JIA receive biologic therapy, but evidence on biologic therapy withdrawal is lacking. This study aims to increase our understanding of whether and when pediatric rheuma...
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Article
Develo** a Framework of Cost Elements of Socioeconomic Burden of Rare Disease: A Sco** Review
Rare diseases place a significant burden on patients, families, the healthcare system, and society. Evidence on the socioeconomic burden of rare disease is limited and mostly reflects diseases where treatments...
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Article
Open AccessEvaluating key performance indicators of the process of care in juvenile idiopathic arthritis
To determine whether and how often the information to measure a set of key performance indicators (KPIs) in juvenile idiopathic arthritis (JIA) is found in data collected routinely in a Pediatric Rheumatology ...
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Article
Patient acceptable symptom state (PASS): thresholds for the EQ-5D-5L and Oxford hip and knee scores for patients with total hip and knee replacement
To define patient acceptable symptom state (PASS) cut-off values for the EQ-5D-5L and Oxford hip (OHS) and knee (OKS) scores 6 and 12 months after total hip (THR) or knee (TKR) replacement. To compare PASS cut...
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Article
A Simulation Modelling Study of Referral Distribution Policies in a Centralized Intake System for Surgical Consultation
Delays beyond recommended wait times, especially for specialist services, are associated with adverse health outcomes. The Alberta Surgical Initiative aims to improve the referral wait time—the time between a ...
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Article
Open AccessSystem-level performance measures of access to rheumatology care: a population-based retrospective study of trends over time and the impact of regional rheumatologist supply in Ontario, Canada, 2002–2019
To determine whether there were improvements in rheumatology care for rheumatoid arthritis (RA) between 2002 and 2019 in Ontario, Canada, and to evaluate the impact of rheumatologist regional supply on access.
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Article
Factors That Patients Consider in Their Choice of Non-Surgical Management for Hip and Knee Osteoarthritis: Formative Qualitative Research for a Discrete Choice Experiment
Approximately half of patients with hip and knee osteoarthritis have tried non-surgical management before surgical consultation. Understanding the many factors affecting the uptake of recommended strategies is...
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Article
Perspectives of Pediatric Rheumatologists on Initiating and Tapering Biologics in Patients with Juvenile Idiopathic Arthritis: A Formative Qualitative Study
Few studies have examined pediatric rheumatologists’ approaches to treatment decision making for biologic therapy for patients with juvenile idiopathic arthritis (JIA). This study presents the qualitative rese...
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Article
Open AccessFactors associated with care- and health-related quality of life of caregivers of children with juvenile idiopathic arthritis
This study investigates the relationship of child, caregiver, and caring context measurements with the care-related quality of life (CRQoL) and health-related quality of life (HRQoL) of caregivers of children ...
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Article
The Application of Preference Elicitation Methods in Clinical Trial Design to Quantify Trade-Offs: A Sco** Review
Patients can express preferences for different treatment options in a healthcare context, and these can be measured with quantitative preference elicitation methods.
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Open AccessReal-world data reveals the complexity of disease modifying anti-rheumatic drug treatment patterns in juvenile idiopathic arthritis: an observational study
Pharmacological treatment is a cornerstone of care for children with juvenile idiopathic arthritis (JIA). The objective of this study is to evaluate prescription patterns of conventional and biologic disease m...
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Open AccessCharacterization of non-adopters of COVID-19 non-pharmaceutical interventions through a national cross-sectional survey to assess attitudes and behaviours
Adoption of non-pharmaceutical interventions (NPIs) remains critical to curtail the spread of COVID-19. Using self-reported adherence to NPIs in Canada, assessed through a national cross-sectional survey of 44...
