Browsing by Author "Lorenzetti, Diane L."

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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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    Incorporating and evaluating citizen engagement in health research: a scoping review protocol
    (2021-09-28) Shahid, Anmol; Rosgen, Brianna K.; Krewulak, Karla D.; Lorenzetti, Diane L.; Foster, Nadine; Sept, Bonnie G.; Leigh, Jeanna P.; Stelfox, Henry T.; Fiest, Kirsten M.
    Abstract Background Citizen engagement in research is an emerging practice that involves members of the general public in research processes such as priority setting, planning, decision-making, research conduct, implementation, evaluation, and dissemination. Engaging citizens in research, particularly health research, increases the relevance of study findings, minimizes waste by facilitating stewardship over resources, and builds public trust in the research. While several existing frameworks guide the application of citizen engagement principles to health research, it is unclear how citizen engagement can be utilized to maximize benefits and minimize risks and challenges in health research. To address the gaps in knowledge around citizen engagement in health research, we propose a scoping review to synthesize the state of knowledge on methods to incorporate and evaluate citizen engagement in research. A protocol is presented in this manuscript. Methods The methodology for our scoping review is guided by Arksey and O’ Malley’s framework for scoping reviews, and additional recommendations by Levac and colleagues. We will include peer-reviewed and gray literature that report on citizen engagement in health research (including biomedical, clinical, health systems and services, and social, cultural, environmental and population health) and report method(s) to conduct, measure, or evaluate citizen engagement. We will systematically search electronic databases (MEDLINE, EMBASE, CINAHL, JSTOR, PsycINFO, Scopus, and Science Direct) from inception onwards and search relevant organizations’ websites for additional studies, frameworks, and reports on citizen engagement. Title and abstract and full-text citations will be screened independently and in duplicate. Data will be extracted independently and in duplicate, including document characteristics, citizen engagement definitions and goals, and outcomes of citizen engagement (e.g., barriers, facilitators). Discussion This review will synthesize the definitions, goals, methods, outcomes, and significance of citizen engagement in health research, as well as any potential barriers, facilitators, and challenges outlined in existing literature. The findings will provide an evidence-based foundation for developing new or improved guidance for citizen engagement in health research. Overall, we anticipate that our scoping review will be a preliminary step to meaningful engagement of citizens in research and strengthen the relationship between the scientific community and the public through transparency and collaboration. Systematic review registration Open Science Framework  https://osf.io/hzcbr .
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    Priority setting for Canadian Take-Home Naloxone best practice guideline development: an adapted online Delphi method
    (2022-07-02) Ferguson, Max; Medley, Andrea; Rittenbach, Katherine; Brothers, Thomas D.; Strike, Carol; Ng, Justin; Leece, Pamela; Elton-Marshall, Tara; Ali, Farihah; Lorenzetti, Diane L.; Buxton, Jane A.
    Abstract Background Take-Home Naloxone (THN) is a core intervention aimed at addressing the toxic illicit opioid drug supply crisis. Although THN programs are available in all provinces and territories throughout Canada, there are currently no standardized guidelines for THN programs. The Delphi method is a tool for consensus building often used in policy development that allows for engagement of stakeholders. Methods We used an adapted anonymous online Delphi method to elicit priorities for a Canadian guideline on THN as a means of facilitating meaningful stakeholder engagement. A guideline development group generated a series of key questions that were then brought to a 15-member voting panel. The voting panel was comprised of people with lived and living experience of substance use, academics specializing in harm reduction, and clinicians and public health professionals from across Canada. Two rounds of voting were undertaken to score questions on importance for inclusion in the guideline. Results Nine questions that were identified as most important include what equipment should be in THN kits, whether there are important differences between intramuscular and intranasal naloxone administration, how stigma impacts access to distribution programs, how effective THN programs are at saving lives, what distribution models are most effective and equitable, storage considerations for naloxone in a community setting, the role of CPR and rescue breathing in overdose response, client preference of naloxone distribution program type, and what aftercare should be provided for people who respond to overdoses. Conclusions The Delphi method is an equitable consensus building process that generated priorities to guide guideline development.
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    The association between the built environment and intervention-facilitated physical activity: a narrative systematic review
    (2022-07-14) McCormack, Gavin R.; Patterson, Michelle; Frehlich, Levi; Lorenzetti, Diane L.
    Abstract Background A diverse range of interventions increase physical activity (PA) but few studies have explored the contextual factors that may be associated with intervention effectiveness. The built environment (BE) may enhance or reduce the effectiveness of PA interventions, especially interventions that encourage PA in neighbourhood settings. Several studies have investigated the effects of the neighbourhood BE on intervention-facilitated PA, however, a comprehensive review of evidence has yet to be conducted. In our systematic review, we synthesize evidence from quantitative studies that have examined the relationships between objectively-measured neighbourhood BE and intervention-facilitated PA in adults. Method In October 2021, we searched 7 databases (Medline, CINAHL, Embase, Web of Science, SPORTDiscus, Environment Complete, and Cochrane Central Register of Controlled Trials) for English-language studies reporting on randomized and non-randomized experiments of physical activity interventions involving adults (≥18 years) and that estimated the association between objectively-measured BE and intervention-facilitated physical activity. Results Twenty articles, published between 2009 and 2021, were eligible for inclusion in the review. Among the 20 articles in this review, 13 included multi-arm experiments and 7 included single-arm experiments. Three studies examined PA interventions delivered at the population level and 17 examined interventions delivered at the individual level. PA intervention characteristics were heterogeneous and one-half of the interventions were implemented for at least 12-months (n = 10). Most studies were undertaken in North America (n = 11) and most studies (n = 14) included samples from populations identified as at risk of poor health (i.e., metabolic disorders, coronary heart disease, overweight, cancer, high blood pressure, and inactivity). Fourteen studies found evidence of a neighbourhood BE variable being negatively or positively associated with intervention-facilitated PA. Conclusion Approximately 70% of all studies reviewed found evidence for an association between a BE variable and intervention-facilitated PA. The BE’s potential to enhance or constrain the effectiveness of PA interventions should be considered in their design and implementation.
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    The Role of Peer Mentors in Promoting Knowledge and Skills Development in Graduate Education
    (2020-11-08) Lorenzetti, Diane L.; Nowell, Lorelli; Jacobsen, Michele; Lorenzetti, Liza; Clancy, Tracey; Freeman, Georgina; Oddone Paolucci, Elizabeth
    The objective of this study was to explore the role of peer mentorship in facilitating graduate student resiliency, knowledge acquisition, and development of academic competencies. We conducted a qualitative case study, using in-person interview data from sixty-two students recruited from four professional faculties (Education, Medicine, Nursing, and Social Work) at a large Canadian University. We identified four broad themes derived from a thematic and constant comparative analysis of interview data: (1) knowledge sharing, (2) skills development, (3) academic milestones, and (4) program supports. Graduate students reported that peer mentorship promoted the development of learning environments that emphasized community, collaboration, and shared purpose. Students believed that peer mentors facilitated their access to essential procedural and disciplinary knowledge and helped them to develop academic and research skills and achieve key academic milestones. While the majority of the students interviewed had not participated in any formal peer-mentoring program, they recommended that any future program incorporate mentorship training and include access to collaborative spaces and targeted opportunities for students to develop these relationships.
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    A Value Driven, Co-designed Framework for Sustained Patient Engagement
    (2019-04-22) McCarron, Tamara L.; Marlett, Nancy J.; Noseworthy, Tom W.; Hassay, Derek N.; White, Deborah Elizabeth; Lorenzetti, Diane L.; Bryan, Stirling; McCaughey, Deirdre
    Patient involvement in various aspects of healthcare, from improving healthcare quality to promoting patient safety, has emerged as a critical priority, but understanding how best to engage patients is not well-understood. This knowledge gap results in frustrating barriers for decision-makers looking to draw transferable lessons to inform the design of patient engagement programs and processes. Coupled with challenges to the sustainability of health care and the need for innovative solutions, patient engagement has become central to improving both quality and delivery of services. This thesis is comprised of three independent studies that form an overarching program of research. The first study reports the results of a scoping review to understand how health systems are investing in building the capacity and ability of patients. In the second study, we build on the findings from the scoping review and a series of qualitative interviews to inform a provincial survey tool to understand the motivations of individuals who chose to give their time and talents to health organizations. In the third study, we co-designed a framework for patient engagement, grounded in market choice behaviour theory and informed by the literature, a province-wide survey and four provincial stakeholder workshops. While significant research exists that highlights the motivations of the public who choose to participate in decision-making, a limited number of studies have explored these concepts within healthcare. As the roles of patient and family members in the context of healthcare decision-making continue to evolve, the importance of effective and sustainable engagement programs will become increasingly important. A deeper knowledge of patient motivations will not only create meaningful engagement opportunities for patients but will also enable health organizations to gain from the experience of these individuals. While further research is needed to support the engagement of diverse groups of stakeholders, the findings from this study have developed an understanding of how patients are motivated to make engagement decisions. This knowledge will help focus patient engagement efforts, thereby improving the efficiency and cost effectiveness of these programs, ensuring their relative sustainability.
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    Well-being approaches targeted to improve child and youth health post-COVID-19 pandemic: a scoping review
    (2024-06-21) Moss, Stephana J.; Sriskandarajah, Cynthia; Brundin-Mather, Rebecca; Cherak, Michal S.; Mizen, Sara J.; Stelfox, Maia; Halperin, Donna; Halperin, Scott; Ahmed, Sofia B.; Lorenzetti, Diane L.; Smith, Stacie; Harley, Micaela; Tutelman, Perri R.; Birnie, Kathryn A.; Anglin, Melanie C.; Stelfox, Henry T.; Fiest, Kirsten M.; Racine, Nicole; Parsons Leigh, Jeanna
    Abstract Background Our previous work synthesized published studies on well-being interventions during COVID-19. As we move into a post-COVID-19 pandemic period there is a need to comprehensively review published strategies, approaches, and interventions to improve child and youth well-being beyond deleterious impacts experienced during COVID-19. Methods Seven databases were searched from inception to January 2023. Studies were included if they: (1) presented original data on an approach (i.e., approach applied) or (2) provided recommendations to inform development of a future approach (i.e., approach suggested), (3) targeted to mitigate negative impacts of COVID-19 on child and youth (≤18 year) well-being, and (4) published on or after December 2019. Results 39 studies (n = 4/39, 10.3% randomized controlled trials) from 2021 to 2023 were included. Twenty-two studies applied an approach (n = 22/39, 56.4%) whereas seventeen studies (n = 17/39, 43.6%) suggested an approach; youth aged 13–18 year (n = 27/39, 69.2%) were most frequently studied. Approach applied records most frequently adopted an experimental design (n = 11/22, 50.0%), whereas approach suggested records most frequently adopted a cross-sectional design (n = 13/22, 59.1%). The most frequently reported outcomes related to good health and optimum nutrition (n = 28/39, 71.8%), followed by connectedness (n = 22/39, 56.4%), learning, competence, education, skills, and employability (n = 18/39, 46.1%), and agency and resilience (n = 16/39, 41.0%). Conclusions The rapid onset and unpredictability of COVID-19 precluded meaningful engagement of children and youth in strategy development despite widespread recognition that early engagement can enhance usefulness and acceptability of interventions. Published or recommended strategies were most frequently targeted to improve connectedness, belonging, and socialization among children and youth.