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Perceptions of Individuals Living With Spinal Cord Injury toward Preference-Based Quality Of Life Instruments: A Qualitative Exploration

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2014
Abstract: 

Background

Generic preference-based health-related quality of life instruments are widely used to measure health benefit within economic evaluation. The availability of multiple instruments raises questions about their relative merits and recent studies have highlighted the paucity of evidence regarding measurement properties in the context of spinal cord injury (SCI). This qualitative study explores the views of individuals living with SCI towards six established instruments with the objective of identifying ‘preferred’ outcome measures (from the perspective of the study participants).

Methods

Individuals living with SCI were invited to participate in one of three focus groups. Eligible participants were identified from Vancouver General Hospital’s Spine Program database; purposive sampling was used to ensure representation of different demographics and injury characteristics. Perceptions and opinions were solicited on the following questionnaires: 15D, Assessment of Quality of Life 8-dimension (AQoL-8D), EQ-5D-5L, Health Utilities Index (HUI), Quality of Well-Being Scale Self-Administered (QWB-SA), and the SF-36v2. Framework analysis was used to analyse the qualitative information gathered during discussion. Strengths and limitations of each questionnaire were thematically identified and managed using NVivo 9 software.

Results

Major emergent themes were (i) general perceptions, (ii) comprehensiveness, (iii) content, (iv) wording and (v) features. Two sub-themes pertinent to content were also identified; ‘questions’ and ‘options’. All focus group participants (n = 15) perceived the AQoL-8D to be the most relevant instrument to administer within the SCI population. This measure was considered to be comprehensive, with relevant content (i.e. wheelchair inclusive) and applicable items. Participants had mixed perceptions about the other questionnaires, albeit to varying degrees.

Conclusions

Despite a strong theoretical underpinning, the AQoL-8D (and other AQoL instruments) is infrequently used outside its country of origin (Australia). Empirical comparative analyses of the favoured instruments identified in this qualitative study are necessary within the context of spinal cord injury.

Document type: 
Article
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Bicycling Crash Circumstances Vary By Route Type: A Cross-Sectional Analysis

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2014
Abstract: 

Background

Widely varying crash circumstances have been reported for bicycling injuries, likely because of differing bicycling populations and environments. We used data from the Bicyclists’ Injuries and the Cycling Environment Study in Vancouver and Toronto, Canada, to describe the crash circumstances of people injured while cycling for utilitarian and leisure purposes. We examined the association of crash circumstances with route type.

Methods

Adult cyclists injured and treated in a hospital emergency department described their crash circumstances. These were classified into major categories (collision vs. fall, motor vehicle involved vs. not) and subcategories. The distribution of circumstances was tallied for each of 14 route types defined in an earlier analysis. Ratios of observed vs. expected were tallied for each circumstance and route type combination.

Results

Of 690 crashes, 683 could be characterized for this analysis. Most (74%) were collisions. Collisions included those with motor vehicles (34%), streetcar (tram) or train tracks (14%), other surface features (10%), infrastructure (10%), and pedestrians, cyclists, or animals (6%). The remainder of the crashes were falls (26%), many as a result of collision avoidance manoeuvres. Motor vehicles were involved directly or indirectly with 48% of crashes. Crash circumstances were distributed differently by route type, for example, collisions with motor vehicles, including “doorings”, were overrepresented on major streets with parked cars. Collisions involving streetcar tracks were overrepresented on major streets. Collisions involving infrastructure (curbs, posts, bollards, street furniture) were overrepresented on multiuse paths and bike paths.

Conclusions

These data supplement our previous analyses of relative risks by route type by indicating the types of crashes that occur on each route type. This information can guide municipal engineers and planners towards improvements that would make cycling safer.

Document type: 
Article
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“I Knew What Was Going To Happen If I Did Nothing and So I Was Going To Do Something”: Faith, Hope, and Trust In The Decisions Of Canadians With Multiple Sclerosis To Seek Unproven Interventions Abroad

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2014
Abstract: 

Background

Chronic cerebrospinal venous insufficiency (CCSVI) treatment is an unproven intervention aimed at relieving some of the symptoms of multiple sclerosis (MS). Despite limited evidence of the efficacy and safety of this intervention, Canadians diagnosed with MS have been traveling abroad to access this procedure as it is not available domestically outside of limited clinical trials. This paper discusses the experiences of Canadians with MS seeking CCSVI treatment abroad.

Methods

This paper presents a secondary analysis of 15 interviews with participants who had gone abroad for CCSVI treatment. Interviews were conducted over the phone between October 2012 and December 2012. All interviews were digitally recorded and transcribed verbatim. Transcripts were hand coded for: 1) why CCSVI treatment was sought and where it was obtained; 2) the role of having hope for a cure in seeking CCSVI; 3) the impact of MS on everyday life; and 4) the role other people played in the decision to go abroad.

Results

The authors identified loss of faith, hope, and trust as themes emerging from the transcripts. The participants experienced a loss of faith with the Canadian health system and especially the neurologists who were responsible for their care and the classification of MS as a neurological disease. Access to CCSVI treatment abroad generated hope in these participants, but they were cautious in their expectations, focusing on symptom management rather than a cure. Trust in their caregivers abroad was generated through the recommendations of other MS sufferers and the credentials of their caregivers abroad.

Conclusions

By deciding to seek an unproven intervention abroad, these individuals took on responsibility for their care from the Canadian health system. While evidence of the efficacy of CCSVI treatment is limited, the participants felt that they were making a rational care decision, focusing on the empowerment and renewed hope generated by seeking this intervention. Health professionals and policy makers globally should consider the causes of loss of faith in their domestic care systems and balance the benefits of empowerment and renewed hope against concerns that unproven interventions may create new health risks.

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Article
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Setting the Stage for Chronic Health Problems: Cumulative Childhood Adversity among Homeless Adults with Mental Illness in Vancouver, British Columbia

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2014
Abstract: 

Background

It is well documented that childhood abuse, neglect and household dysfunction are disproportionately present in the backgrounds of homeless adults, and that these experiences adversely impact child development and a wide range of adult outcomes. However, few studies have examined the cumulative impact of adverse childhood experiences on homeless adults with mental illness. This study examines adverse events in childhood as predictors of duration of homelessness, psychiatric and substance use disorders, and physical health in a sample of homeless adults with mental illness.

Methods

This study was conducted using baseline data from a randomized controlled trial in Vancouver, British Columbia for participants who completed the Adverse Childhood Experiences (ACE) scale at 18 months follow-up (n = 364). Primary outcomes included current mental disorders; substance use including type, frequency and severity; physical health; duration of homelessness; and vocational functioning.

Results

In multivariable regression models, ACE total score independently predicted a range of mental health, physical health, and substance use problems, and marginally predicted duration of homelessness.

Conclusions

Adverse childhood experiences are overrepresented among homeless adults with complex comorbidities and chronic homelessness. Our findings are consistent with a growing body of literature indicating that childhood traumas are potent risk factors for a number of adult health and psychiatric problems, particularly substance use problems. Results are discussed in the context of cumulative adversity and self-trauma theory.

Trials registration

This trial has been registered with the International Standard Randomized Control Trial Number Register and assigned ISRCTN42520374.

Document type: 
Article
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Diabetes in Pregnancy among First Nations Women in Alberta, Canada: A Retrospective Analysis

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2014
Abstract: 

Background

In addition to increasing the risk of adverse birth outcomes, diabetes in pregnancy is thought to be an important driver of the epidemic of type 2 diabetes affecting Canada’s First Nations population. The relative contributions of gestational diabetes mellitus (GDM) and pre-existing diabetes are not well understood. We generated a comprehensive epidemiological profile of diabetes in pregnancy over a 10-year period among the First Nations population of Alberta, Canada.

Methods

De-identified administrative data for 427,058 delivery records were obtained for the years 2000–2009. Pregnancy risk factors and delivery outcomes were described and compared by ethnicity (First Nations vs. non-First Nations) and diabetes status. Age-adjusted prevalence values for GDM and pre-existing diabetes were calculated and were compared by ethnicity. Longitudinal changes over time were also examined. Predictors were explored using logistic regression analysis.

Results

First Nations women had more antenatal risk factors and adverse infant outcomes that were compounded by diabetes. First Nations descent was an independent predictor of diabetes in pregnancy (p < 0.001). GDM prevalence was significantly higher among First Nations (6.1%) compared to non-First Nations women (3.8%; p < 0.001), but prevalence values increased significantly over time only in non-First Nations women (4.5 average annual percent change; p < 0.05). The prevalence of pre-existing diabetes was stable over time in both groups, but First Nations women experienced a 2.5-fold higher overall prevalence compared with non-First Nations women (1.5% vs. 0.6%, respectively; p < 0.001).

Conclusions

Although First Nations women experience a higher overall prevalence of diabetes in pregnancy, the lack of increase in the prevalence over time is encouraging. However, because high-risk pregnancies and poor outcomes are more common among First Nations women, particularly those with diabetes, strategies to improve perinatal care must be implemented.

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Article
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Stakeholder Views of Ethical Guidance Regarding Prevention and Care in HIV Vaccine Trials

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2014
Abstract: 

Background

South Africa is a major hub of HIV prevention trials, with plans for a licensure trial to start in 2015. The appropriate standards of care and of prevention in HIV vaccine trials are complex and debated issues and ethical guidelines offer some direction. However, there has been limited empirical exploration of South African stakeholders’ perspectives on ethical guidance related to prevention and care in HIV vaccine trials.

Methods

Site staff, Community Advisory Board members and Research Ethics Committee members involved with current HIV vaccine trials in South Africa were invited to participate in an exploration of their views. A questionnaire listed 10 care and 10 prevention recommendations drawn from two widely available sets of ethical guidelines for biomedical HIV prevention trials. Respondents (n = 98) rated each recommendation on five dimensions: “Familiarity with”, “Ease of Understanding”, “Ease of Implementing”, “Perceived Protection”, and “Agreement with” each ethical recommendation. The ratings were used to describe stakeholder perspectives on dimensions for each recommendation. Dimension ratings were averaged across the five dimensions and used as an indication of overall merit for each recommendation. Differences were explored across dimensions, between care-oriented and prevention-oriented recommendations, and between stakeholder groups.

Results

Both care and prevention recommendations were rated highly overall, with median ratings well above the scale midpoint. In general, informed consent recommendations were most positively rated. Care-related recommendations were rated significantly more positively than prevention-related recommendations, with the five lowest-rated recommendations being prevention-related. The most problematic dimension across all recommendations was “Ease of Implementing,” and the least problematic was “Agreement with,” suggesting the most pressing stakeholder concerns are practical rather than theoretical; that is, respondents agree with but see barriers to the attainment of these recommendations.

Conclusions

We propose that prevention recommendations be prioritized for refinement, especially those assigned bottom-ranking scores for “Ease of Implementing”, and/ or “Ease of Understanding” in order to assist vaccine stakeholders to better comprehend and implement these recommendations. Further qualitative research could also assist to better understand nuances in stakeholder reservations about implementing such recommendations.

Document type: 
Article
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Early Immune Adaptation in HIV-1 Revealed By Population-Level Approaches

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2014
Abstract: 

Background

The reproducible nature of HIV-1 escape from HLA-restricted CD8+ T-cell responses allows the identification of HLA-associated viral polymorphisms “at the population level” – that is, via analysis of cross-sectional, linked HLA/HIV-1 genotypes by statistical association. However, elucidating their timing of selection traditionally requires detailed longitudinal studies, which are challenging to undertake on a large scale. We investigate whether the extent and relative timecourse of immune-driven HIV adaptation can be inferred via comparative cross-sectional analysis of independent early and chronic infection cohorts.

Results

Similarly-powered datasets of linked HLA/HIV-1 genotypes from individuals with early (median < 3 months) and chronic untreated HIV-1 subtype B infection, matched for size (N > 200/dataset), HLA class I and HIV-1 Gag/Pol/Nef diversity, were established. These datasets were first used to define a list of 162 known HLA-associated polymorphisms detectable at the population level in cohorts of the present size and host/viral genetic composition. Of these 162 known HLA-associated polymorphisms, 15% (occurring at 14 Gag, Pol and Nef codons) were already detectable via statistical association in the early infection dataset at p ≤ 0.01 (q < 0.2) – identifying them as the most consistently rapidly escaping sites in HIV-1. Among these were known rapidly-escaping sites (e.g. B*57-Gag-T242N) and others not previously appreciated to be reproducibly rapidly selected (e.g. A*31:01-associated adaptations at Gag codons 397, 401 and 403). Escape prevalence in early infection correlated strongly with first-year escape rates (Pearson’s R = 0.68, p = 0.0001), supporting cross-sectional parameters as reliable indicators of longitudinally-derived measures. Comparative analysis of early and chronic datasets revealed that, on average, the prevalence of HLA-associated polymorphisms more than doubles between these two infection stages in persons harboring the relevant HLA (p < 0.0001, consistent with frequent and reproducible escape), but remains relatively stable in persons lacking the HLA (p = 0.15, consistent with slow reversion). Published HLA-specific Hazard Ratios for progression to AIDS correlated positively with average escape prevalence in early infection (Pearson’s R = 0.53, p = 0.028), consistent with high early within-host HIV-1 adaptation (via rapid escape and/or frequent polymorphism transmission) as a correlate of progression.

Conclusion

Cross-sectional host/viral genotype datasets represent an underutilized resource to identify reproducible early pathways of HIV-1 adaptation and identify correlates of protective immunity.

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Article
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A Scoping Study to Identify Opportunities to Advance the Ethical Implementation and Scale-Up of HIV Treatment as Prevention: Priorities for Empirical Research

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2014
Abstract: 

Background

Despite the evidence showing the promise of HIV treatment as prevention (TasP) in reducing HIV incidence, a variety of ethical questions surrounding the implementation and “scaling up” of TasP have been articulated by a variety of stakeholders including scientists, community activists and government officials. Given the high profile and potential promise of TasP in combatting the global HIV epidemic, an explicit and transparent research priority-setting process is critical to inform ongoing ethical discussions pertaining to TasP.

Methods

We drew on the Arksey and O’Malley framework for conducting scoping review studies as well as systematic approaches to identifying empirical and theoretical gaps within ethical discussions pertaining to population-level intervention implementation and scale up. We searched the health science database PubMed to identify relevant peer-reviewed articles on ethical and implementation issues pertaining to TasP. We included English language articles that were published after 2009 (i.e., after the emergence of causal evidence within this field) by using search terms related to TasP. Given the tendency for much of the criticism and support of TasP to occur outside the peer-reviewed literature, we also included grey literature in order to provide a more exhaustive representation of how the ethical discussions pertaining to TasP have and are currently taking place. To identify the grey literature, we systematically searched a set of search engines, databases, and related webpages for keywords pertaining to TasP.

Results

Three dominant themes emerged in our analysis with respect to the ethical questions pertaining to TasP implementation and scale-up: (a) balancing individual- and population-level interests; (b) power relations within clinical practice and competing resource demands within health care systems; (c) effectiveness considerations and socio-structural contexts of HIV treatment experiences within broader implementation contexts.

Conclusion

Ongoing research and normative deliberation is required in order to successfully and ethically scale-up TasP within the continuum of HIV care models. Based on the results of this scoping review, we identify several ethical and implementation dimensions that hold promise for informing the process of scaling up TasP and that could benefit from new research.

Document type: 
Article
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