Browsing by Author "Currie, Gillian R."

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    Are we Capturing the Socioeconomic Burden of Rare Genetic Disease? A Scoping Review of Economic Evaluation and Cost-of-Illness Studies
    (PharmacoEconomics, 2023-12) Marshall, Deborah A.; Gerber, Brittany; Lorenzetti, Diane L.; MacDonald, Karen V.; Bohach, Riley J.; Currie, Gillian R.
    Objectives: Rare diseases have a significant impact on patients, families, the health system, and society. Measuring the socioeconomic burden (SEB) is crucial to valuing interventions for rare diseases. Healthcare system costs are significant, but so are costs to other government sectors, patients, families, and society. To understand the breadth of costs captured in rare disease studies, we examined the cost categories and elements of SEB captured in published studies. Methods: A scoping review was conducted using five electronic databases to identify English language economic evaluations and cost-of-illness studies of interventions for rare diseases (2011-2021). We mapped costs using a previously developed evidence-informed framework of SEB costs for rare disease. Results: Of 4890 studies identified, 48 economic evaluations and 22 cost-of-illness studies were included. While 18/22 cost-of-illness studies utilized a societal perspective, only 7/48 economic evaluations incorporated societal costs. Most reported cost categories related to medical costs, with medication and hospitalizations being the most common elements for both study designs. Costs borne by patients, families, and society were reported less among economic evaluations than cost-of-illness studies. These included: productivity (10% vs 77%), travel/accommodation (6% vs 68%), government benefits (4% vs 18%), and family impacts (0% vs 50%). Conclusions: Contrary to cost-of-illness analyses, most of the included economic evaluations did not account for the hidden burden of rare disease, that is costs borne by patients, families, and societies. Including these types of costs in future studies would provide a more comprehensive picture of the burden of disease, providing empirical data to inform how we value and make decisions regarding rare disease interventions, health policy and resource allocation.
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    Barriers experienced by families new to Alberta, Canada when accessing routine-childhood vaccinations
    (2023-07-12) Fullerton, Madison M.; Pateman, Margaret; Hasan, Hinna; Doucette, Emily J.; Cantarutti, Stephen; Koyama, Amanda; Weightman, Amanda M.; Tang, Theresa; Coakley, Annalee; Currie, Gillian R.; Fabreau, Gabriel; Constantinescu, Cora; Marshall, Deborah A.; Hu, Jia
    Abstract Background 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 parents face when accessing RCVs in Alberta, Canada. Methods Between July 6th—August 31st, 2022, we recruited participants from Alberta, Canada to participate in moderated focus group discussions. Inclusion criteria included parents who had lived in Canada for < 5 years with children < 18 years old. Focus groups were transcribed verbatim and analyzed using content and deductive thematic analysis. The capability opportunity motivation behaviour model was used as our conceptual framework. Results Four virtual and three in-person focus groups were conducted with 47 participants. Overall, parents were motivated and willing to vaccinate their children but experienced several barriers related to their capability and opportunity to access RCVs. Five main themes emerged: 1) lack of reputable information about RCVs, 2) language barriers when looking for information and asking questions about RCVs, 3) lack of access to a primary care provider (PCP), 4) lack of affordable and convenient transportation options, and 5) due to the COVID-19 pandemic, lack of available vaccine appointments. Several minor themes were also identified and included barriers such as lack of 1) childcare, vaccine record sharing, PCP follow-up. Conclusions Our findings highlight that several barriers faced by newcomer families ultimately stem from issues related to accessing information about RCVs and the challenges families face once at vaccination clinics, highlighting opportunities for health systems to better support newcomers in accessing RCVs.
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    Distributed practice for cardiopulmonary resuscitation (CPR) training: improving educational efficiency and cost-effectiveness in clinical settings
    (2019-04-12) Lin, Yiqun; Hecker, Kent; Cheng, Adam; Grant, Vincent J.; Currie, Gillian R.
    Cardiac arrest is a major health problem; high-quality cardiopulmonary resuscitation (CPR) is one of the most important determinants of survival and survival with good neurological outcomes of the victims. Despite annual training, healthcare providers struggle to conduct guideline compliant CPR during the management of cardiac arrests. Increased likelihood of survival from cardiac arrest depends upon the integration of medical science, educational efficiency and local implementation (of science and education). There is some evidence to suggest that the use of distributed practice (i.e. separating the training into small portions dispersed over time) and real-time feedback (on compression depth, rate, and recoil) can improve CPR quality in healthcare providers and medical trainees. The aim of this research is to explore the efficacy and cost-effectiveness of distributed CPR training with real-time feedback relative to current CPR training practices. To accomplish this, the following work was completed: (1) designing a randomized trial to compare a new CPR training program incorporating workplace-based distributed CPR practice and real-time feedback with a group receiving conventional Heart and Stroke Foundation of Canada (HSFC) Basic Life Support (BLS) course; (2) describing the key components of, and approaches to economic evaluation in the context of simulation-based medical education; and (3) exploring the cost-effectiveness of distributed training program relative to conventional training to inform the decision whether or not to adopt the new CPR training program. This research shows that (1) workplace-based distributed CPR training significantly improves the acquisition and retention of CPR skills in practicing acute care providers and (2) this training method results in decreased training costs and increased learning outcomes in our local context. This research provides evidence to support the educational efficiency of distributed CPR training and informs the decision on implementation of this educational strategy by addressing the cost-effectiveness. Importantly, this research is the first study that comparing distributed CPR training with conventional training and longitudinally analyzing the CPR performance to address skill retention. Furthermore, this research represents the first economic evaluation studies in resuscitation training.
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    An Economic Evaluation of Body Checking Policies in Bantam Ice Hockey
    (2019-01-25) Lee, Raymond; Currie, Gillian R.; Marshall, Deborah A.; Emery, Carolyn A.; Palacios-Derflingher, Luz Maria
    Sport-related injury is the leading cause of injury in youth and are costly to the healthcare system. Disallowing body checking in Pee Wee (ages 11-12) ice hockey has been found to be effective in reducing the risk of injuries and associated healthcare costs, however the impact on injury risk and costs in Bantam (ages 13-14) remains unknown. The objectives of this study are to compare injury rates and costs between non-elite (lower 70% divisions of play) Bantam players in leagues allowing body checking to where body checking is disallowed, and to project the overall change on the number of injuries and costs to the Alberta healthcare system if body checking were disallowed for all Bantam players over one season. The study found that disallowing body checking reduced injuries by 4.32/1000 player-hours and saved cost by $1,737/1000 player-hours in the public healthcare system. This policy change could potentially prevent 1,102 injuries that occur during games and save $331,522 in the public healthcare system over one season in Alberta. However, this study used injury rates adjusted only for exposure hours and team clustering, but not other covariates or repeated observations. Thus further analysis is required before policy recommendations can be made.
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    Evaluating key performance indicators of the process of care in juvenile idiopathic arthritis
    (2023-04-21) Cooper, Sarah M.; Currie, Gillian R.; Kromm, Seija; Twilt, Marinka; Marshall, Deborah A.
    Abstract Objective 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 Clinic. Methods A retrospective electronic chart review and administrative data analysis was conducted for a cohort of 140 patients with JIA at a tertiary Pediatric Rheumatology Clinic between 2016–2020. The set of KPIs include measuring patient outcomes (joint assessment, physician’s global assessment of disease activity, assessment of functional ability, composite disease activity measurement), access to care (waiting time between referral and first visit, visit with the rheumatologist within the first year of diagnosis, annual follow-up visits with the rheumatologist), and safety (tuberculosis screening, and laboratory monitoring). Documentation was assessed as a binary variable indicating whether the required information was ever found. Documentation frequency for each KPI was assessed with counts and percentages of the number of times the required information was documented for each clinic visit. Compliance with the safety KPI definitions was assessed using administrative databases. Results Data for each KPI were found at least once in the cohort and documentation varied in frequency and consistency. Access to care and safety KPIs were documented more frequently than patient outcome KPIs. A joint assessment was documented at every visit for 95% of patients, 46% for an assessment of pain, and none for a physician’s global assessment of disease activity, an assessment of functional ability, or a composite disease activity measurement. Conclusion Although feasible to measure, there is an opportunity for improving the consistency of documentation. Having an active system of monitoring KPIs and tools to simplify measurement is a key step in the process toward improved patient care outcomes. Streamlining the collection of KPI data can increase the likelihood of compliance. Next steps should involve replicating this study in various centres.
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    Exploring Health Locus of Control and Patient Preferences for the Non-Surgical Management of Osteoarthritis
    (2021-08-09) Kennedy, Bryanne L; Currie, Gillian R.; Marshall, Deborah A.; Emery, Carolyn A.; Kania-Richmond, Anna A.; Gagliardi, Anna R.
    Background:There is no cure for osteoarthritis, and management aims to reduce pain and improve function. Despite guidelines, 61% of people are referred for surgery before trying non-surgical options, and this needs to be further understood. Many factors affect uptake of options, including the osteoarthritis information available to patients. Individual beliefs around who and whatinfluences health, or locus of control, is related to patient preferences for disease management. There is a paucity of literature on locus of control and preferences for osteoarthritis management.Objectives:To identify the factors that patients with hip and knee osteoarthritis consider when choosing management strategies, and to explore their beliefs about who and what influences osteoarthritis symptoms and progression.Methods:Semi-structured interviews with patients who self-reported a diagnosis by a medical professional with hip and/or knee osteoarthritis and had at least one osteoarthritic joint that had not undergone replacement. A multifaceted recruitment approach was used. Interviews were transcribed verbatim and the Braun and Clarke method for thematic analysis was employed.Results:Interviews were conducted with 13 patients from Alberta, Canada. Sixteen factors were identified that participants considered when choosing management strategies. Majority were extrinsic (11), relating to features of programs and services, while five were intrinsic relating to how individual perspectives influence decision making. Three novel factors emerged: 1) whether further management was desired, 2) the prospect of surgery, and 3) participants’ choice inmanagement. Three descriptive themes captured participants’ beliefs about who and what influences their osteoarthritis symptoms and progression: etiology, progression, and symptoms. Most participants believed that others and themselves had some influence over their osteoarthritis symptoms.Conclusions:The findings reinforced that patient’s management decisions for their osteoarthritis were based on the options available to them. This was the first study to explore locus of control in the context of non-surgical osteoarthritis management and provides a point of departure for future work. Factors that patients consider when choosing management strategies were also identifiedthat could be considered for subsequent quantitative research on patient preferences.Keywords: osteoarthritis, internal-external control, patient preference, conservative treatment,disease management, qualitative research
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    Testing the feasibility of eliciting preferences for health states from adolescents using direct methods
    (BioMed Central Ltd., 2018-06-22) Lau, Ryan; Crump, R. Trafford; Cox, Elizabeth D.; Currie, Gillian R.; Panepinto, Julie Ann
    Measuring adolescents' preferences for health states can play an important role in evaluating the delivery of pediatric healthcare. However, formal evaluation of the common direct preference elicitation methods for health states has not been done with adolescents. Therefore, the purpose of this study is to test how these methods perform in terms of their feasibility, reliability, and validity for measuring health state preferences in adolescents.
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    Transitions from pediatric to adult rheumatology care for juvenile idiopathic arthritis: a patient led qualitative study
    (2022-11-14) Currie, Gillian R.; Harris, M.; McClinton, L.; Trehan, N.; Van Dusen, A.; Shariff, M.; Kuzmyn, T.; Marshall, D. A.
    Abstract Background Juvenile idiopathic arthritis (JIA) is a childhood autoimmune disease that causes swelling and pain in at least one joint. Young people with JIA experience symptoms that persist into adulthood, and thus will undergo a transition including the o transfer of care from a pediatric rheumatologist an adult rheumatologist. Missing from the literature is research that centres the transition experience of young people with JIA in Canada. This goal of this patient-led research was to explore the experience young people with JIA through the process of transition. Methods Qualitative study using the Patient and Community Engaged Research (PaCER) approach. Trained patient-researchers conducted three focus groups using the Set, Collect and Reflect PaCER process. Participants, recruited via purposive and snowball sampling using research/personal networks and social media, were young people with JIA in Canada between 18 and 28 years who had experienced with the process of transition to adult care. Recordings were transcribed verbatim. Patient researchers individually coded overlapping sections of the data, and thematic analysis was conducted. Results In total, nine individuals participated in one or more focus groups. Three themes were identified, with sub-themes: preparedness for transition (readiness for the transfer of care, developing self-advocacy skills), continuity and breadth of care (changing relationships, culture shock, new responsibilities), need for support (social support, mental health support, and ongoing support needs – beyond the transfer of care. Peer support was a connecting concept in the support sub-themes. Transition was more than a change in primary physician but also a change in the care model and breadth of care provided, which was challenging for young people especially if they had insufficient information. Conclusions Transition from pediatric to adult care in rheumatology is a significant period for young people living with JIA, and this patient-led study provided insight into the experience from the perspective of young people with JIA which is critical to informing the development of supports for patients through the process. Patients, caregivers, pediatric and adult rheumatologists and members of the multi-disciplinary care team need to collaborate in terms of resources preparing for transfer, and support throughout the transition process to ensure a successful transition process.
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    Uncovering the hidden socioeconomic impact of juvenile idiopathic arthritis and paving the way for other rare childhood diseases: an international, cross-disciplinary, patient-centered approach (PAVE Consortium)
    (2024-08-09) Marshall, Deborah A.; Gerber, Brittany; Currie, Gillian R.; Antón, Jordi; De Somer, Lien; Dey, Michelle; Egert, Tsipi; Egert, Yona; Henan, Lia; Klotsche, Jens; Mifsut, Laura M.; Minden, Kirsten; Normand, Christophe; Porte, David; Saurenmann, Rotraud K.; Swart, Joost F.; Uziel, Yosef; Wilson, Jennifer; Wouters, Carine; Ziv, Amit; Benseler, Susanne M.
    Abstract Background Juvenile idiopathic arthritis (JIA) refers to a heterogeneous group of rheumatic conditions in children. Novel drugs have greatly improved disease outcomes; however, outcomes are impacted by limited awareness of the importance of early diagnosis and adequate treatment, and by differences in access across health systems. As a result, patients with JIA continue to be at risk for short- and long-term morbidity, as well as impacts on virtually all aspects of life of the child and family. Main body Literature on the socioeconomic burden of JIA is largely focused on healthcare costs, and the impact of JIA on patients, families, and communities is not well understood. High quality evidence on the impact of JIA is needed to ensure that patients are receiving necessary support, timely diagnostics, and adequate treatment, and to inform decision making and resource allocation. This commentary introduces the European Joint Programme on Rare Diseases: Producing an Arthritis Value Framework with Economic Evidence: Paving the Way for Rare Childhood Diseases (PAVE) project, which will co-develop a patient-informed value framework to measure the impact of JIA on individuals and on society. With a patient-centered approach, fundamental to PAVE is the involvement of three patient advocacy organizations from Canada, Israel, and Europe, as active research partners co-designing all project phases and ensuring robust patient and family engagement. The framework will build on the findings of projects from six countries: Canada, Germany, Switzerland, Spain, Israel, and Belgium, exploring costs, outcomes (health, well-being), and unmet needs (uveitis, mental health, equity). Conclusion This unique international collaboration will combine evidence on costs (from family to societal), outcomes (clinical, patient and family outcomes), and unmet needs, to co-design and build a framework with patients and families to capture the full impact of JIA. The framework will support the development of high-quality evidence, encompassing economic and clinical considerations, unmet needs, and patient perspectives, to inform equitable resource allocation, health system planning, and quality of care better aligned with the needs of children with JIA, their families, and communities. Knowledge gained from this novel approach may pave the way forward to be applied more broadly to other rare childhood diseases.