Browsing by Author "Lorenzetti, Diane"

Now showing 1 - 8 of 8
  • Thumbnail Image
    ItemOpen Access
    Developing a Framework of Cost Elements of Socioeconomic Burden of Rare Disease: A Scoping Review
    (PharmacoEconomics, 2023-04-07) Currie, Gillian R; Gerber, Brittany; Lorenzetti, Diane; MacDonald, Karen; Benseler, Susanne M; Bernier, Francois P; Boycott, Kym M; Carias, K. Vanessa; Hamelin, Bettina; Hayeems, Robin Z; LeBlanc, Claire; Twilt, Marinka; van Rooijen, Gijs; Wong-Rieger, Durhane; Yeung, Rae S. M.; Marshall, Deborah A.
    Background and Objective: 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 are available. We developed a framework encompassing recommended cost elements for studies of the socioeconomic burden of rare diseases. Methods: A scoping review, conducted in five databases (Cochrane Library, EconLit, Embase, MEDLINE, and APA PsycINFO), identified English language publications from 2000 and 2021 presenting frameworks developed for determining, measuring or valuing costs for rare or chronic diseases. Cost elements were extracted and used to develop a literature-informed framework. Structured feedback was gathered from experts in rare diseases, health economics/health services and policy research to revise the framework. Results: Of 2990 records identified, eight papers were included and informed our preliminary framework; three focused on rare disease and five on chronic disease. Following expert input, we developed a framework consisting of nine cost categories (inpatient, outpatient, community, healthcare products/goods, productivity/education, travel/accommodation, government benefits, family impacts, and other), with several cost elements within each category. Our framework includes unique costs, added from the expert feedback, including genetic testing to inform treatment, use of private laboratories or out-of-country testing, family involvement in foundations and organizations, and advocacy costs for special access programs. Conclusions: Our work is the first to identify a comprehensive list of cost elements for rare disease for use by researchers and policy makers to fully capture socioeconomic burden. Use of the framework will increase the quality and comparability of future studies. Future work should focus on measuring and valuing these costs through onset, diagnosis, and post-diagnosis.
  • Thumbnail Image
    ItemOpen Access
    Group peer-mentorship in academic libraries: an approach to enhancing research engagement
    (American Library Association, 2022-01) Lorenzetti, Diane; Powelson, Susan; Lashewicz, Bonnie; Casebeer, Ann; Hayden, K. Alix; Oddone Paolucci, Elizabeth; Beran, Tanya
  • Thumbnail Image
    ItemOpen Access
    Paving a Path for Pediatric Hospital Medicine in Canada: Defining National Competencies Using Delphi Methodology
    (2024-07-01) Vetere, Peter Joseph; Cooke, Suzette; Beran, Tanya; Millar, Kelly; Kassam, Aliya; Lorenzetti, Diane
    Background: The field of Pediatric Hospital Medicine (PHM) has grown considerably in North America over the last three decades in response to the increasing complexity and acuity of the pediatric in-patient population. Although PHM fellowship programs have been developed in Canada, no national competencies framework currently exists to guide curricular content. This study aimed to identify competencies required for the practice of PHM in Canada. Methods: Using Delphi methodology, a national panel of experts in PHM iteratively rated potential competencies, on a 5-point scale, to determine their priority for inclusion. Responses were analyzed after each round. Competencies that were assigned a rating of three or less by 80% or more of panelists were removed from subsequent rounds. The remaining competencies were re-sent to panelists for further ratings until consensus was reached, defined as Cronbach’s α ≥0.95 and after a minimum of two survey rounds. At the conclusion of the Delphi process, competencies where 80% or more of the panelists assigned a rating or four or higher were included. Results: Two rounds of the Delphi process were required to reach consensus. Thirty-five participants completed both survey rounds. The participants represented 13 Canadian pediatric tertiary care centers and five community hospitals. Of 176 initial competencies, 109 PHM competencies achieved consensus. Conclusion: This is the first study to define national competencies for PHM in Canada. The competencies identified provide a framework for PHM fellowship program directors to shape local curricula. The results may also be used to inform the development of comprehensive national PHM fellowship curricula.
  • Thumbnail Image
    ItemOpen Access
    Perspectives on neurological patient registries: a literature review and focus group study
    (BioMed Central, 2013-11-09) Korngut, Lawrence; MacKean, Gail; Casselman, Lisa; Johnston, Megan; Day, Lundy; Lam, Darren; Lorenzetti, Diane; Warner, Janet; Jetté, Nathalie; Pringsheim, Tamara
  • Thumbnail Image
    ItemOpen Access
    Reference management software for systematic reviews and meta-analyses: an exploration of usage and usability
    (BioMed Central, 2013-11-15) Lorenzetti, Diane; Ghali, William A.
  • Thumbnail Image
    ItemOpen Access
    Researching Researchers: Exploring the Challenges of Conducting Research During a Pandemic
    (2023-11-06) Onuoha, Onyinyechi Choice; Beran, Tanya; Lorenzetti, Diane; Reynold-Pearson, Jacqueline
    Abstract Background: Research Assistants (RAs) play a key role in the successful completion of research. When data collection and recruitment are disrupted, as was the case during the COVID-19 pandemic and accompanying restrictions, the effects on RAs attempting to conduct research are not well known. Objective: This study explored RAs’ perspectives of conducting research during the COVID-19 pandemic. Methods: Five RAs who had begun collecting data at a mid-western children’s hospital on how a robot named MEDi® could help patients uphold health and safety procedures during the COVID-19 pandemic, took part in semi-structured interviews. Thematic analysis was conducted on the interview data. Results: Through our analysis, we identified four key themes (and sub-themes) that reflected RAs’ experiences of conducting research during the COVID-19 pandemic: Inspiration and Motivation; Research Barriers; Human Connections and Relationships; and Creativity and Problem-Solving. The first theme focused on the sources of RAs’ inspiration and motivation to participate in research; the second focused on the barriers that affected data collection and recruitment. The third theme described the impact that human connections and relationships had on the success of the research, and the final theme explored the RAs’ creativity and problem-solving approaches, which aided in navigating the challenges faced during the pandemic. The challenges faced by RAs in this study were overcome with positive attitudes, creativity, and collaboration. Conclusion: This research experience allowed RAs to explore creative strategies to adapt research methods to suit unanticipated circumstances and develop an array of interpersonal skills to facilitate participation in future research and career activities.
  • Thumbnail Image
    ItemOpen Access
    A Scoping Review of Mentoring Programs for Academic Librarians
    (Elsevier, 2015-03) Lorenzetti, Diane; Powelson, Susan
    Introduction The purpose of this study was to comprehensively review the best practices and current trends for mentoring programs in academic libraries. Methods The authors conducted a scoping review of the existing literature on academic library mentoring programs. The following sources were searched to identify relevant studies: ERIC, Education Research Complete (Ebsco) LISA, Library & Information Sciences Source (Ebsco), Scopus, the TRIP database, Web of Science and the grey literature. Results Among 802 unique abstracts, 42 studies reporting on 40 unique programs were selected for inclusion in this review. Of these, 28 programs were specifically designed to facilitate the development of junior or untenured librarians. Common program elements included participant input into mentor/mentee selection, written guidelines, mentor training, and senior administration support. Notably, only 18 authors (42.8 percent) reported on program evaluation methods and outcomes. Conclusions Despite the prevalence of the literature that exists on this topic, mentorship programs in academic libraries have been insufficiently explored. Rigorous and ongoing evaluation is required to determine the importance of mentoring programs to the career development of academic librarians, and identify design elements critical to their success.
  • Thumbnail Image
    ItemOpen Access
    A systematic review of interventions to increase breast and cervical cancer screening uptake among Asian women
    (BioMed Central, 2012) Lu, Mingshan; Moritz, Sabina; Lorenzetti, Diane; Sykes, Lindsay; Straus, Sharon; Quan, Hude
    Funding provided by the Open Access Authors Fund.