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- ItemOpen AccessDeveloping 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.
- ItemOpen AccessImpacts of the SARS-CoV-2 pandemic on the seasonal pattern of hospitalizations for acute respiratory diseases among children in Alberta, Canada(2024) Lukac, Christine D; Simms, Brett; Kwong, Grace P.S.; Holodinsky, Jessalyn K.; Johnson, David W.; Kellner, James D.Introduction: Acute infectious respiratory diseases (ARD) among children generally have a biennial pattern – peak incidence is highest every other winter. This seasonal pattern of ARD was interrupted in 2020 by SARS-CoV-2 and non-pharmaceutical interventions (NPI). We conducted a population based retrospective cohort study in Alberta, that measured the impact on (i) the weekly incidence of hospitalizations to quantify healthcare use, (ii) the weekly percent of PICU admissions to monitor clinical severity, and (iii) the weekly average age at discharge to characterise the affected population. Methods: From Apr 2003-Dec 2023, all hospital discharges and PICU admissions for ARD (i.e. bronchiolitis, pneumonia, influenza-like-illness, and croup) among children < 18 years old were identified in the provincial hospital Discharge Abstract Database. Weekly incidence of hospital discharge was calculated using population denominators. Weekly percent PICU admissions was calculated using all hospital discharges as the denominator. Weekly average age at discharge was calculated from birth to discharge in months. Seasonal autoregressive-integrated-moving-average (SARIMA) models predicted the expected weekly outcomes from Apr 2020 onward. Incidence ratios and percent change compared observed versus expected outcomes. Analyses were conducted in R version 4.2.2 (2022-10-31) and R studio build 2022.12.0+353. Results: There were 63,776 hospitalizations for ARD among children from Apr 2003-Dec 2023: 22,963 (36.01%) for bronchiolitis, 23,977 (37.44%) for pneumonia, 10,833 (16.97%) for influenza-like-illness, and 4,984 (7.81%) for croup. Of the hospitalizations, 4,167 (6.53%) included a PICU admission. The average weekly incidence of hospitalization for ARD per 100,000 children decreased 12.71-fold during Dec 2020-Feb 2021 (0.82 observed vs. 10.42 [95%CI 5.11, 15.73] expected) and increased 1.51-fold during Dec 2022-Feb 2023 (16.28 observed vs. 10.77 [95%CI 4.71, 16.83] expected). The average percentage of PICU admissions steadily increased from 4.07% (95%CI 1.22%, 6.91%) in Dec 2003-Feb 2004 to 10.48% (95%CI 8.36%, 12.60%) in Dec 2019-Feb 2020. There was no significant change in the percentage of PICU admissions in Dec 2020-Feb 2021 and Dec 2022-Feb 2023, 11.17% (95%CI 0.00%, 26.32%) and 11.86% (95%CI 9.33%, 14.39%) respectively. During each winter season, the average age at discharge decreased to 25 months (95%CI 17.85, 33.74) annually. Similar patterns for incidence of hospitalizations, percent PICU admissions, and average age at discharge were observed for bronchiolitis, pneumonia, influenza-like-illness, and croup. Discussion: SARS-CoV-2 and NPI had significant impacts on provincial hospitalization for ARD among children. Initially hospitalizations for ARD decreased 12.71-fold during Dec 2020-Feb 2021. With SARS-CoV-2 vaccine availability, increased population immunity, and relaxation of NPI, hospitalizations for ARD increased 1.51-fold during Dec 2022-Feb 2023. However, there was no change in clinical severity based on percent PICU admissions, and no change in affected population based on average age at discharge.
- ItemMetadata onlyThe Cost of Cystic Fibrosis Care in Canada: A Scoping Review(2024) Desai, Leena; Bomersback, Taryn; Galante, Gary; Bjornson, Candice; Hirota, SimonBackground: Cystic fibrosis (CF) contributes a significant economic burden on individuals, health systems and society. This economic impact is highly relevant in a single-payer, publicly funded health system such as Canada. CFTR modulator therapy has been shown in large clinical trials to reduce the burden of disease in the pediatric population. Currently 17% of patients at the Alberta Children’s Hospital in Calgary, AB do not qualify for any CFTR modulator therapy, presumably resulting in an incremental cost to the system. Precision medicine tools such as organoid models may offer an opportunity for n-of-1 trials for individual patients who are currently not approved for therapy. Rationale: In order to better understand the health and economic impact of cystic fibrosis in Canada, we wish to identify direct, indirect and intangible costs of cystic fibrosis care in Alberta and Canada, and highlight the higher rate of heterogeneity amongst our southern Alberta CF population which predisposes to higher cost of care due to lack of approval to currently available therapies. Aim and Objective: This protocol describes the purpose of a scoping review which is to identify the most accurate estimation of the cost of cystic fibrosis care in Canada, and gather comprehensive data on how the costs of CF care (including direct, indirect and intangible costs) are defined and measured in Canada. Methodology: The protocol is developed using the JBI (Joanna Briggs Institute) guidance for scoping reviews and based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) Checklist, both of which will also guide its reporting. We will search PUBMED and OVID/MEDLINE for peer-reviewed English-language publications and grey literature search of relevant databases (ProQuest Dissertation and Theses, Canadian Health Research Collection) and organizational websites (Health Canada, Government of Canada, Cystic Fibrosis Foundation of Canda, Canadian Agency for Drugs and Technology in Health (CADTH)).
- ItemOpen AccessEvaluating the Impact of Community-Driven Grassroots Vaping Interventions on Changing the Attitudes, Perceptions, and Knowledge of Adolescents in Grade 7 and 8 Classrooms(None, 2023-11-14) Beg, Mirza; Dawood, Yahya; Patten, ScottThis is a protocol for a randomized control study design evaluating the effectiveness of a video designed to increase knowledge and improve attitudes towards vaping in a student population attending a middle school.
- ItemOpen Access2SLGBTQQIA+ Experiences of Intimate Partner Abuse and Help-Seeking: An Intersectional Scoping Review(2023-08-08) Kurbatfinski, Stefan; Whitehead, Jessica; Hodge, Lee; Ulicki, Noah; Madaan, Ridham; Henry, Richard S.; Parente, Isi; Kumbah, Ophilia; Pino, Fritz; Krentz, Hartmut B.; Morris, Martin; Santinele Martino, Alan; Maurer, Katherine; Marshall, ZackBackground Intimate partner abuse (IPA) encompasses various forms of abuse between intimate partners, including physical, sexual, emotional, financial, legal, cultural, spiritual, religious, and other types of violence. Recent studies challenge cisgender heteronormative representations of IPA by revealing that the prevalence of IPA between Two-Spirit, lesbian, gay, bisexual, trans, queer, questioning, intersex, asexual, and other sexual or gender minority (2SLGBTQQIA+) partners is similar to heterosexual IPA. However, discriminatory beliefs enacted through homophobia, transphobia, racism, sexism, and colonialism uniquely influence 2SLGBTQQIA+ experiences of IPA. Moreover, the lack of service availability and diversity specifically tailored to 2SLGBTQQIA+ communities further complicate efforts to address IPA, exacerbating inequities and impacting well-being. Objectives This scoping review aimed to achieve three main objectives: 1. Identify knowledge strengths and gaps related to IPA among 2SLGBTQQIA+ people; 2. Describe the help-seeking efforts and experiences of 2SLGBTQQIA+ people who have encountered IPA, including interactions with informal supports (e.g., friends, family members) and formal services (e.g., police, counsellors); and 3. Provide evidence-based recommendations to enhance service responsiveness to 2SLGBTQQIA+ communities. Methodology The review protocol was registered on PROSPERO (#CRD42020139639) and followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews (PRISMA-ScR) guidelines. We included qualitative, quantitative, and mixed-method studies that examined help-seeking patterns and outcomes of 2SLGBTQQIA+ people who experience and/or use IPA against partners. A comprehensive search was conducted across multiple databases, including Medline, Embase, PsycInfo, Scopus, CINAHL, Genderwatch, and Social Science Abstracts. From the 5,827 initial results, 1,790 references were screened on full text. A total of 703 peer-reviewed studies focused on 2SLGBTQQIA+ IPA, and of those, 142 specifically examined help-seeking and 2SLGBTQQIA+ IPA. Each reference was screened by at least two members of the review team and data extraction was supported by four authors. Findings were categorized by sexual and gender identity group when possible, with further consideration of intersectionality. Results Most studies examined mixed sexual and gender minority (SGM) samples without providing stratified results. Community-specific studies on IPA were more likely to focus on lesbians, and trans people, followed by studies with bisexual participants, gay men, and Two-Spirit people. Notably, no studies included intersex participants, and there were no specific results available for individuals questioning their sexual and/or gender identity or those who identified as asexual. Emotional abuse or violence was commonly reported as the most prevalent form of IPA among LGBT individuals. Bisexual men and women seemed to experience a higher prevalence of IPA compared to lesbians or gay men. Many studies revealed that 2SLGBTQQIA+ individuals were often unaware that the control, violence, or manipulation they experienced in their intimate relationships could be classified as abuse, acting as a barrier to seeking support or leaving abusive relationships. This lack of recognition was often attributed to gendered discourses that centre cisheteronormative relationships and overlook 2SLGBTQQIA+ specific forms of abuse. Other significant barriers across all groups included a lack of knowledge about available services, the absence of 2SLGBTQQIA+-specific services (and services providers), and anticipated or enacted discrimination from service providers. Negative experiences with accessing police services were commonly reported by many identity groups, while LGBT individuals also expressed dissatisfaction with legal services, indicating limited opportunities for seeking justice. Counsellors and friends were often regarded as positive sources of support. Key Messages Based on this review, the following areas require attention: 1. Critical changes are needed to gender-based violence services, particularly violence shelters, to properly respond to 2SLGBTQQIA+ communities. Many services perpetuate gender norms and engage in discriminatory actions that impede adequate support, including a significant service gap for both cis and trans male-identified individuals. 2. Ensuring justice for 2SLGBTQQIA+ people who experience violence is essential, necessitating attention to formal legal systems, policing, and transformative justice. 3. Counselling services are a strength and a valuable resource for 2SLGBTQQIA+ people in relation to IPA. It is crucial to support this sector, including measures to reduce individual costs and increase accessibility. 4. Increased education and training are needed for service providers working in formal services to reduce stigma and misconceptions and improve service interactions. 5. Educational curricula in schools should be adapted to include 2SLGBTQQIA+ IPA, enabling individuals to recognize experiences of abuse and support one another. 6. Informal support from friends is a crucial resource, and its effectiveness could be enhanced by establishing stronger connections to collective care initiatives. 7. Research and service design need to meaningfully integrate intersectional frameworks that better respond to the full diversity of 2SLGBTQQIA+ communities. 8. There is an urgent need for a collective impact model that addresses abuse prevention, coordinated service navigation pathways, evaluation of informal and formal supports, shared values (intersectional and trauma-informed care), and increased funding. By implementing these recommendations, progress can be made in addressing the gaps and challenges identified in this review leading to improved IPA supports and services for 2SLGBTQQIA+ communities.