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Application of Protection Motivation Theory to Clinical Trial Enrolment for Pediatric Chronic Conditions

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2020-03-16
Abstract: 

Background

Parents of children living with chronic but manageable conditions hope for improved therapies or cures, including Advanced Therapy Medicinal Products (ATMPs). Multiple pediatric clinical trials for ATMPs are underway, but the risk profile of ATMPs for chronic conditions is largely unknown and likely different than for terminal pediatric illnesses. Applying Protection Motivation Theory modified to the context of pediatric ATMP clinical trial enrollment, our study analyses information needs of parents of children living with chronic manageable conditions: Type 1 Diabetes (T1D) or Inherited Retinal Diseases (IRD).

Methods

We conducted semi-structured interviews with 15 parents of children living with T1D and 14 parents of children living with an IRD about: a) family background and the diagnostic experience; b) awareness of gene and stem cell therapy research and clinical trials for T1D and IRD; c) information sources on trials and responses to that information; d) attitudes to trial participation, including internationally; e) understanding of trial purpose and process; and f) any experiences with trial participation. We then discussed a pediatric ATMP clinical trial information sheet, which we developed with experts. We applied directed qualitative content analysis, based on PMT, to examine the information preferences of parents in deciding whether to enrol their children in stem cell or gene therapy clinical trials.

Results

Parents balanced trial risks against their child’s ability to cope with the chronic condition. The better the child’s ability to cope with vision impairment or insulin management, the less likely parents were to assume trial risks. Conversely, if the child struggled with his/her vision loss, parents were more likely to be interested in trial participation, but only if the risks were low and likelihood for potential benefit was high.

Conclusions

Fear of adverse events as part of threat appraisal was the predominant consideration for parents in considering whether to enroll their child living with a manageable, chronic condition in a pediatric clinical trial of an ATMP. This consideration outweighed potential benefits and severity of their child’s condition. Parents called for available safety data and fulsome communication processes that would enable them to make informed decisions about clinical trial enrolment on behalf of their children.

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"Tremendous Financial Burden": Crowdfunding for Organ Transplantation Costs in Canada

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2019-12-20
Abstract: 

Online crowdfunding platforms such as GoFundMe are used to raise funds for health-related expenses associated with medical conditions such as organ transplantation. By investigating crowdfunding in Canadian organ transplantation, this study aimed to increase understanding of the motivations and outcomes of organ transplantation crowdfunding. Canadian liver and kidney transplantation campaigns posted to GoFundMe between May 30 & 31 2018 were identified and after exclusion, 258 kidney and 171 liver campaigns were included in study. These campaigns were coded for: worthiness of the campaign recipient, requested financial and non-monetary contributions, how monetary donations would be spent, and comments on the Canadian health system, among others. Results suggest Canadian organ donors, transplant candidates, recipients, and their families and caregivers experience significant financial difficulties not addressed by the public health system. Living and medication costs, transportation and relocation expenses, and income loss were the expenses most commonly highlighted by campaigners. Liver campaigns raised nearly half their goal while kidney campaigns received 11.5% of their requested amount. Findings highlight disease burden and the use of crowdfunding as a response to the extraordinary costs associated with organ transplantation. Although crowdfunding reduces some financial burden, it does not do so equitably and raises ethical concerns.

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Who Is Ready to Bicycle? Categorizing and Mapping Bicyclists with Behavior Change Concepts

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2019-07-29
Abstract: 

Bicyclist categorizations have been developed to sort individuals into distinct groups based on shared traits, which can help researchers and practitioners understand complex patterns of bicycling behavior. Previous categorizations have focused on bicycle facility comfort, seasonal patterns of use, and behaviors and attitudes, but not on readiness for bicycling. We present the added-value of a categorization of bicyclists based on the stages of change feature of the Transtheoretical Model (TTM) and examine how this new categorization can contribute unique insights for practice through novel behavioral information and findings from mapping and spatial analysis. We use survey data from a sample of 2398 individuals from three medium-sized Canadian cities: Victoria and Kelowna in British Columbia, and Halifax, Nova Scotia. We categorize individuals into the five TTM stages of change according to three questions: intent to bicycle more, use of a bicycle in the past 12 months, and whether or not they usually use a bicycle to get around. One-third of respondents had not considered bicycling (Pre-contemplation) while one-fifth had begun considering or preparing to bicycle (Contemplation and Preparation) and two-fifths occasionally bicycled (Action). Only 5% regularly bicycled (Maintenance). Men, younger individuals, and residents of Kelowna and Victoria (compared to Halifax) were more likely to be in advanced readiness stages (Action and Maintenance). We used spatial statistical techniques to locate hotspots where there were disproportionately more Action-stage individuals as these could be areas where infrastructure improvements would likely be met with the greatest increase in bicycling; however, results suggested Action-stage individuals were dispersed geographically. We show that categorizing people as a function of readiness for change allows for characterization of populations that are likely to be beneficially impacted by policies to support bicycling. By focusing on readiness to bicycle, this approach could be used by practitioners to prioritize bicycling interventions.

Document type: 
Article

The Opioid Mortality Epidemic in North America: Do We Understand the Supply Side Dynamics of This Unprecedented Crisis?

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2020-02-17
Abstract: 

While there has been extensive attention to the ‘demand side’ – or use and adverse consequences, including mortality – of the ‘opioid crisis’ presently unfolding across North America, few considerations have focused on the supply side. This paper examines the supply side dynamics of this unprecedented public health phenomenon. We provide evidence for several interrelated supply-side elements that have contributed to the present public health crisis. We observe that initially, persistently high levels of prescription opioid availability and use exposed large proportions of the North American population to opioids, resulting in correspondingly high levels of medical and non-medical use (e.g., involving diversion). While various intervention measures to control prescription opioid availability and use have been implemented in recent years, leading to eventual reductions in opioid dispensing levels, these occurred late in the crisis’s evolution. Moreover, these supply reductions have not been met by corresponding reductions in opioid use or demand levels. These growing discrepancies between opioid demand and prescription-based sources have left major gaps in opioid supplies. In response to such supply gaps, highly potent and toxic illicit opioid products have rapidly proliferated across North America, and become a core driver of the dramatic spikes in opioid overdose fatality levels in recent years. These supply-related interrelations are corroborated by a corresponding increase in illicit opioid-related fatalities, which arose just as medical opioid supplies began to decrease in many jurisdictions. Improved analyses and understanding of the supply-side dynamics of the opioid crisis are urgently needed in order to inform future intervention and policy development. Meanwhile, the high mortality toll related to illicit, highly toxic opioid exposure requires sustained solutions, including supply-oriented measures (e.g., safer opioid distribution for at–risk users) towards improved public health protection.

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How Women Living With HIV React and Respond to Learning About Canadian Law That Criminalises HIV Non-disclosure: ‘How Do You Prove That You Told?’

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2019-01-09
Abstract: 

The Women, ART and the Criminalization of HIV Study is a qualitative, arts-based research study focusing on the impact of the HIV non-disclosure law on women living with HIV in Canada. The federal law requires people living with HIV to disclose their HIV-positive status to sexual partners before engaging in sexual activities that pose what the Supreme Court of Canada called a ‘realistic possibility of transmission’. Drawing on findings from seven education and discussion sessions with 48 women living with HIV regarding HIV non-disclosure laws in Canada, this paper highlights the ways in which women living with HIV respond to learning about the criminalisation of HIV non-disclosure. The most common emergent themes included: the way the law reproduces social and legal injustices; gendered experiences of intimate injustice; and the relationship between disclosure and violence against women living with HIV. These discussions illuminate the troubling consequences inherent in a law that is antithetical to the science of HIV transmission risk, and that fails to acknowledge the multiple barriers to HIV disclosure that women living with HIV experience. Women’s experiences also highlight the various ways the law contributes to their experiences of sexism, racism and other forms of marginalisation in society.

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Validating A Self-Report Measure Of HIV Viral Suppression: An Analysis of Linked Questionnaire and Clinical Data from the Canadian HIV Women’s Sexual And Reproductive Health Cohort Study

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2017-03-24
Abstract: 

Background  We assessed the validity of a self-report measure of undetectable viral load (VL) among women with HIV in British Columbia (BC), Canada. Questionnaire data from the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study was linked with population-based clinical data from the BC Centre for Excellence in HIV/AIDS. Self-reported undetectable VL was assessed by the question: “What was your most recent VL, undetectable (i.e. <50 copies/mL) or detectable (i.e. ≥50 copies/mL)?” Laboratory measurements of VL <50 copies/mL (closest to/before study visit) were the criterion for validity analyses. We measured positive and negative predictive values (PPV, NPV) and likelihood ratios (LR+, LR−).

Results  Of 356 participants, 99% were linked to clinical data. Those unlinked (n = 1), missing self-report VL (n = 18), or missing self-report and laboratory VL (n = 1) were excluded. Among the remaining 336: median age was 44 (IQR 37–51); 96% identified as cis-gender; 84% identified as heterosexual; and 45% identified as Indigenous, 40% White, 8% African, Caribbean, or Black, and 8% other/multiple ethnicities. Overall, 85% self-reported having an undetectable VL while 82% had clinical data indicating viral suppression. The PPV was 93.7 (95% CI 90.2–96.2) indicating that 94% of women who self-reported being undetectable truly were. The NPV was 80.4 (95% CI 66.9–90.2). LR+ was 3.2 (2.1–4.6) and LR− was 0.05 (0.03–0.10).

Conclusions  Our self-report measure assessing undetectable VL strongly predicted true viral suppression among Canadian women with HIV. This measure can be used in research settings without laboratory data in regions with high rates of VL testing and suppression.

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Article
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Changes in Mortality Rates and Causes of Death in a Population-based Cohort of Persons Living with and Without HIV from 1996 to 2012

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2017-02-27
Abstract: 

Background  Non-HIV/AIDS-related diseases are gaining prominence as important causes of morbidity and mortality among people living with HIV. The purpose of this study was to characterize and compare changes over time in mortality rates and causes of death among a population-based cohort of persons living with and without HIV in British Columbia (BC), Canada.

Methods  We analysed data from the Comparative Outcomes And Service Utilization Trends (COAST) study; a retrospective population-based study created via linkage between the BC Centre for Excellence in HIV/AIDS and Population Data BC, and containing data for HIV-infected individuals and the general population of BC, respectively. Our analysis included all known HIV-infected adults (≥ 20 years) in BC and a random 10% sample of uninfected BC adults followed from 1996 to 2012. Deaths were identified through Population Data BC – which contains information on all registered deaths in BC (BC Vital Statistics Agency dataset) and classified into cause of death categories using International Classification of Diseases (ICD) 9/10 codes. Age-standardized mortality rates (ASMR) and mortality rate ratios were calculated. Trend test were performed.

Results  3401 (25%), and 47,647 (9%) individuals died during the 5,620,150 person-years of follow-up among 13,729 HIV-infected and 510,313 uninfected individuals, respectively. All-cause and cause-specific mortality rates were consistently higher among HIV-infected compared to HIV-negative individuals, except for neurological disorders. All-cause ASMR decreased from 126.75 (95% CI: 84.92-168.57) per 1000 population in 1996 to 21.29 (95% CI: 17.79-24.79) in 2011-2012 (83% decline; p < 0.001 for trend), compared to a change from 7.97 (95% CI: 7.61-8.33) to 6.87 (95% CI: 6.70-7.04) among uninfected individuals (14% decline; p < 0.001). Mortality rates from HIV/AIDS-related causes decreased by 94% from 103.85 per 1000 population in 1996 to 6.72 by the 2011–2012 era (p < 0.001). Significant ASMR reductions were also observed for hepatic/liver disease and drug abuse/overdose deaths. ASMRs for neurological disorders increased significantly over time. Non-AIDS-defining cancers are currently the leading non-HIV/AIDS-related cause of death in both HIV-infected and uninfected individuals.

Conclusions  Despite the significant mortality rate reductions observed among HIV-infected individuals from 1996 to 2012, they still have excess mortality risk compared to uninfected individuals. Additional efforts are needed to promote effective risk factor management and appropriate screening measures among people living with HIV.

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Article
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High Prevalence of Quasi-legal Psychoactive Substance Use among Male Patients in HIV Care in Japan: A Cross-sectional Study

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2017-02-23
Abstract: 

Background  Syndemics of illicit drug use and HIV remain as significant public health issues around the world. There has been increasing concern regarding the rapidly growing market of new psychoactive substances, particularly in Asia. In response, the Japanese government has increasingly banned such substances in recent years. We sought to identify the prevalence and correlates of use of quasi-legal psychoactive substances among people living with HIV/AIDS (PLHIV) in Japan.

Methods  Data were derived from a nationwide survey of PLHIV conducted at nine leading HIV/AIDS care hospitals between July and December 2013. The prevalence and correlates of the use of quasi-legal psychoactive substances (e.g., synthetic cannabinoids, cathinone derivatives, etc. that had not been prohibited from using at the time of survey) among male participants were examined using multivariate survey logistic regression.

Results  Among 963 study participants, the majority (95.3%) were male. The most commonly used drug among men was quasi-legal psychoactive substances (55.3% ever and 12.8% in the previous year). In multivariate analysis, the lifetime use of tryptamine-type derivatives (i.e., 5-MeO-DIPT or N,N-diisopropyl-5-methoxytryptamine) (adjusted odds ratio [AOR]: 2.42; 95% confidence interval [CI]: 1.36–4.28) and methamphetamine/amphetamine (AOR: 3.59; 95% CI: 2.13–6.04) were independently associated with recent quasi-legal psychoactive substance use.

Conclusions  In our sample of male PLHIV in Japan, quasi-legal psychoactive substances were the most commonly used drugs. Individuals who had ever used tryptamine-type derivatives or methamphetamine/amphetamine were more likely to report recent quasi-legal psychoactive substance use, suggesting a potential shift in drug use patterns from regulated to unregulated substances among this population. These findings indicate a need for further research to examine implications for HIV care.

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Article
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Dual Sexual and Drug-related Predictors of Hepatitis C Incidence among Sex Workers in a Canadian Setting: Gaps and Opportunities for Scale-up of Hepatitis C Virus Prevention, Treatment, and Care

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2016-12-24
Abstract: 

Background  Hepatitis C virus (HCV) represents a significant cause of morbidity and mortality globally. While sex workers may face elevated HCV risks through both drug and sexual pathways, incidence data among sex workers are severely lacking. HCV incidence and predictors of HCV seroconversion among women sex workers in Vancouver, BC were characterized in this study.

Methods  Questionnaire and serological data were drawn from a community-based cohort of women sex workers (2010–2014). Kaplan–Meier methods and Cox regression were used to model HCV incidence and predictors of time to HCV seroconversion.

Results  Among 759 sex workers, HCV prevalence was 42.7%. Among 292 baseline-seronegative sex workers, HCV incidence density was 3.84/100 person-years (PY), with higher rates among women using injection drugs (23.30/100 PY) and non-injection crack (6.27/100 PY), and those living with HIV (13.27/100 PY) or acute sexually transmitted infections (STIs) (5.10/100 PY). In Cox analyses adjusted for injection drug use, age (hazard ratio (HR) 0.94, 95% confidence interval (CI) 0.86–1.01), acute STI (HR 2.49, 95% CI 1.02–6.06), and non-injection crack use (HR 2.71, 95% CI 1.18–6.25) predicted time to HCV seroconversion.

Discussion  While HCV incidence was highest among women who inject drugs, STIs and the use of non-injection stimulants appear to be pathways to HCV infection, suggesting potential dual sexual/drug transmission. Integrated HCV services within sexual health and HIV/STI programs are recommended.

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Article
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Association Between Internet Use and Body Dissatisfaction Among Young Females: Cross-Sectional Analysis of the Canadian Community Health Survey

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2017-02-17
Abstract: 

Background: Recent research suggests Internet exposure, including Facebook use, is positively correlated with body dissatisfaction, especially among girls and young women. Canada has one of the highest Internet access rates in the world, yet no previous study has examined this relationship using nationally representative data.

Objective: Our objective was to evaluate the relationship between Internet use and body dissatisfaction among a national, population-based sample of Canadian females 12-29 years of age.

Methods: We used cross-sectional data from the Canadian Community Health Survey 2011-2012. Body dissatisfaction was measured using a 5-point Likert scale and defined as “very dissatisfied/dissatisfied” with one’s body. The explanatory variable was time spent using the Internet per week in the past 3 months, ranging from none/<1 hour to >20 hours. We used multinomial logistic regression to investigate whether greater Internet use was associated with increasing odds of being very dissatisfied/dissatisfied, neutral, or satisfied with one’s body, using very satisfied as the referent. Probability survey sampling weights were applied to all analyses.

Results: Of 2983 included participants, sampled to represent 940,786 young Canadian females, most were 20-29 years old (61.98%) and living in households with an annual income Can $80,000 or more (44.61%). The prevalence of body dissatisfaction was 14.70%, and 25- to 29-year-olds were more likely than 12- to 14-year-olds to be very dissatisfied or dissatisfied with their body (20.76% vs 6.34%). Few (5.01%) reported none/<1 hour of Internet use, over half (56.93%) reported 1-10 hours, and one-fifth (19.52%) reported spending >20 hours online per week. Adjusting for age and income, the odds of being very dissatisfied/dissatisfied, relative to very satisfied, were greater in the highest versus lowest Internet use group (adjusted odds ratio [AOR] 3.03, 95% CI 1.19-7.70). The AORs for this level of body dissatisfaction increased across increasing levels of Internet use, ranging from 0.88 (95% CI 0.35-2.21) to 3.03 (95% CI 1.19-7.70). Additionally, those who spent 11-14 hours online were more likely to be neutral (AOR 3.66, 95% CI 1.17-11.45) and those who spent 15-20 hours online were more likely to be neutral (AOR 4.36, 95% CI 1.18-16.13) or satisfied (AOR 2.82, 95% CI 1.14-7.01) with their bodies, relative to very satisfied, compared with those spending no time or <1 hour online.

Conclusions: A substantial proportion of Canadian females 12-29 years of age spent large amounts of time (>20 hours) on the Internet each week, and body dissatisfaction was significantly more likely among this group. Those who spent 11-20 hours online were also more likely to be less satisfied with their bodies. Efforts are needed to support girls and young women to achieve and maintain a positive body image in today’s digital age.

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