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Patient engagement and shared decision-making in trial recruitment intervention studies: a systematic review
No full textAbstract Background Supporting participation decisions and experiences in clinical trials is a persistent challenge that could be improved by two areas: patient engagement (PE), which involves actively collaborating with patients to enhance research relevance and value, and shared decision-making (SDM), which involves helping individuals make evidence-informed, values-based decisions about participation. The extent to which PE and SDM have informed trial recruitment interventions has not been synthesized. Objectives We aimed to explore (1) how PE informed recruitment interventions, both in general and among equity-deserving populations, and whether demographic differences existed between studies using and not using PE, and (2) how SDM has informed recruitment interventions, both in general and among equity-deserving populations. Methods We identified randomized and quasi-randomized recruitment intervention studies from a prior Cochrane review and the Online Resource for Research in Clinical triAls database. We assessed recruitment interventions for reporting of PE and coded the level at which PE occurred (‘substantive engagement’, ‘limited engagement’, ‘both’, ‘unclear’, or ‘no engagement’) and the areas in which PE occurred (development of the research question, intervention design, selecting outcomes, dissemination/implementation, or ‘other’). We coded SDM across six domains: providing information about options, probabilities, clarifying outcomes, guidance in deliberation, using evidence, and disclosure and transparency. Results Of the 122 recruitment intervention studies included, 37 (30.3%) reported PE, although limited engagement was most common (n = 22; 59.5%). PE was most often used in designing the recruitment intervention (n = 32; 86.5%) followed by ‘other’ (n = 11; 29.7%; e.g., PE supporting participant recruitment efforts), developing the research question (n = 2; 5.4%), selecting outcomes (n = 3; 8.1%), and dissemination/implementation (n = 3; 8.1%). SDM was occasionally reported (n = 25; 20.5%), most commonly as ‘providing information about options’ (n = 11; 9.0%). Equity-deserving populations were the focus of 24 studies (19.7%); 11 of these also used PE (9.0%). Conclusions Efforts to improve trial participation have not been informed by literature around patient lived experiences. Recruitment interventions infrequently reported any PE and occasionally mentioned SDM. When PE was mentioned, it was usually limited. These results hold among studies involving equity-deserving populations. Greater consideration of PE and SDM could enhance trial recruitment, research impact, trial participation experiences, and equity in trial recruitment.Plain English abstract Background Getting people to participate in clinical trials is challenging. Two approaches that can help are working closely with patients to ensure the research is important to them (called patient engagement, or PE) and helping them understand their options to make informed choices about whether to participate (called shared decision-making, or SDM). Objectives We wanted to find out how PE and SDM are used when recruiting people for trials in general and when recruiting populations that are often left out of trials. We also wanted to find out the differences between studies that use PE and those that do not. Methods We reviewed studies about how people are recruited into trials. We checked whether these studies used PE, how engaged patients were (ranging from very engaged to not engaged at all), and where they were engaged, such as helping to choose the research question or sharing results. We also reviewed how SDM was used, such as providing information about options or using evidence to help people decide. Results Of 122 studies, only 37 mentioned PE, mostly at low levels of engagement. PE was mostly used to help design the recruitment strategy. Only 25 studies mentioned SDM, mainly by providing people with information. Only 24 studies focused on groups that are often overlooked, and only 11 of these used PE. Conclusions Most efforts to ask people to join trials have not reflected patients’ real-life experiences. Using PE and SDM more effectively could help more people participate and lead to fairer recruitment
Decisional Needs of African, Caribbean, and Black Patients Diagnosed with Brain-Heart Conditions
No full textEquity-deserving groups, including African, Caribbean, and Black (ACB) populations, face barriers to equitable brain-heart healthcare. These barriers contribute to unmet decisional needs and challenges in making informed health decisions. For my master's thesis, I aimed to investigate the decisional needs of ACB patients with brain-heart conditions and the unique challenges they encounter during decision-making using an explanatory sequential mixed-methods design. We included participants from equity-deserving groups who participated in an ongoing parent study. We administered surveys and conducted semi-structured interviews with adult patients from the Ottawa Hospital, the University of Ottawa Heart Institute, and community organizations. Our work was guided by the Ottawa Decision Support Framework, PROGRESS-Plus framework, and intersectionality theory. Survey results from 23 participants facing a variety of brain-heart health decisions in the past 12 months revealed that seven (30.4%) participants experienced clinically significant decisional conflict and six (30.0%) experienced clinically significant decision regret. The common challenges that participants experienced during decision-making included worrying about choosing the wrong option (n=10, 50%) and feeling that brain implications were never part of the conversation for their heart condition (n=9, 45%). The interviews further demonstrated complex barriers contributing to their unmet decisional needs, such as difficulties in accessing health information, strong emotions, challenges with patient-clinician communication, mistrust, and barriers to healthcare access. We integrated these findings using joint displays. The insights gained from this study can inform the development of equitable decision-support interventions to effectively address the decisional needs of ACB patients with brain-heart conditions
How does integrated knowledge translation work? A realist review
No full textAbstract Background Integrated knowledge translation (IKT), or research co-production, is a research approach where researchers and knowledge users carry out a study as equal partners. A growing evidence base demonstrates that IKT produces research findings that are useful, usable and used. Despite knowing how IKT works, we have yet to ascertain how it operates. We conducted a realist review to examine the key mechanisms thought to explain how IKT approaches work in relation to the generation of research in the healthcare sector. Methods The research question was the following: what are the necessary conditions (context) and key mechanisms that explain the success of IKT in the healthcare sector? We conducted the review in two phases. During phase 1, we collaborated with knowledge users and scoped the literature to develop preliminary program theories. In phase 2, we inductively tested the preliminary program theories against the literature. We searched OVID Medline, Embase, PsycINFO, the Cumulative Index of Nursing and Allied Health Literature, Social Sciences Abstracts, and ABI Inform for empirical articles published between 2002 and 2017. An updated search included Embase and OVID Medline articles published between 2017 and 2020. The review includes 84 papers. We included articles written in English that focused on the health sector; encompassed the co-generation of research with researchers, policy-makers, administrators and/or practitioners; and evaluated the IKT approach. In analysing the retained articles, we produced three program theories by looking for common patterns and challenging and refining these theories. Results We postulate three program theories about how teams of researchers and knowledge users work to generate research. We identified three important conditions: infrastructure, role clarity and power sharing. Under particular infrastructure arrangements, effective partnerships are mechanisms that lead to the production of research findings relevant to knowledge users. Role clarity also triggers effective partnerships. With power sharing, synergy is a mechanism that leads to the use of findings. Conclusions We identified different conditions (contextual factors), including infrastructure, role clarity and power sharing, in which IKT produces research findings that are of relevance to knowledge users and used in health settings. Effective partnerships are necessary but an insufficient mechanism for actual use of research findings, and must occur before the mechanism of partnership synergy. This work contributes to our understanding of how to enhance the uptake of evidence by presenting three program theories and a consolidated, mid-range theory of IKT
Development and Validation of a Diagnostic Model - The Hypertension Population Risk Tool (HTNPoRT) - to Predict Hypertension and Describe Risk Profiles: A Population-Based Cross-Sectional Study of Canadians
No full textBackground: Hypertension is preventable, and existing models predicting hypertension lack use for individual and population health planning.
Methods: The Hypertension Population Risk Tool (HTNPoRT) was derived from 19,643 adult respondents in the Canadian Health Measures Survey. Sex-specific logistic regression models predicting hypertension presence were developed using 16 predictors: 4 sociodemographics, 3 psychosocial measures, 2 health status indicators, 5 health behaviours, and 2 chronic conditions.
Results: The final HTNPoRT models were discriminating (c-statistic, men: 0.86; women: 0.88), and well-calibrated in the overall population (observed v. predicted relative difference, men: 1.02%; women: 1.41%) and nearly all equity-relevant subgroups (179 out of 181). Age, diabetes, and body mass index were most influential predictors of hypertension seen on SHAP-derived risk profiles, while predictability of adiposity measures differed across sex.
Conclusions: The public and health policymakers can use the models and risk profiles of HTNPoRT to support planning and decision-making on addressing the hypertension burden
Optimizing a Mesenchymal Stromal Cell Product for Treating Bronchopulmonary Dysplasia
No full textBronchopulmonary dysplasia (BPD) is the most common and severe chronic lung disease affecting premature infants following exposure to hyperoxia and inflammation, with no cure. BPD leads to arrested alveolar growth, pulmonary hypertension (PH) and lifelong breathing difficulties. Mesenchymal stromal cells (MSCs) are multi-potent cells with anti-inflammatory, immunomodulatory and regenerative properties. We previously showed that umbilical cord (UC)-derived MSCs isolated from different donors provide varying lung-protective effects in experimental BPD. Induced pluripotent stem cells (iPSCs) from a single donor have been proposed to provide a large and homogenous pool of iPSC-derived MSCs (iMSCs). Here, we demonstrate that iMSCs improve indicators of PH in a rat neonatal lung injury model. In comparison, we found that only two out of six UC-MSC donors provided therapeutic benefits. Overall, our work demonstrates that iMSCs from a single donor are possible candidates for treating BPD without inter-donor variability, increasing their potential for successful clinical translation
Magmas Contemporaneous with Mineralization at the Hishikari Gold Deposit, Japan
No full textThe Hishikari deposit is a high-grade low-sulphidation epithermal gold deposit in southwestern Kyushu, Japan. The mineralization age data by previous researchers suggest that the Hishikari Lower Andesite is contemporaneous with the mineralization. The relationship between mineralization and volcanism is unclear where this study aims to characterize the parental magmas of the Hishikari Lower Andesites. The Hishikari Lower Andesites collected ~11 km west of Hishikari mine consist of basalts (MgO ≤ 5.7 wt%) and basaltic andesite lavas (MgO ≤3.4wt%) containing Mg-rich clinopyroxene (Mg# ≤ 82) and normal zoned olivine (~Fo 82-66, Mn = 2090 - 4260 ppm, Ni = 150 - 690 ppm) with magnetite inclusions (0.66 wt% V). Samples collected from the Hishikari mine area are basaltic andesites, andesites and dacites. The andesites (1.8 - 3.7 wt% MgO) are characterized by containing clinopyroxene (Mg# ≤ 84) and orthopyroxene (Mg# ≤ 70). The basaltic andesites consist of Mg-rich basaltic andesite lavas (MgO ≤ 7.3 wt%) and pyroclastic rocks (MgO ≤ 3.3 wt%) containing Mg-rich clinopyroxene (Mg# ≤ 84) and olivine phenocrysts (Fo77, Ni ~ 500 ppm, Mn ≤ 3600 ppm) with Cr-bearing (~1.6wt% Cr, 0.46wt% V) magnetite inclusions. The presence of Mg-rich basaltic andesites suggests partial melting in the mantle for volcanism during the mineralization. Primitive mantle-normalized trace element patterns are similar in all rocks and show a subduction geochemical signature with depletions in Nb and Ti. The rocks collected ~11km west of Hishikari mine show similar ⁸⁷Sr/⁸⁶Sr values (0.704510 to 0.704754) and ɛNd values (-1.4 to +0.4) to the basaltic andesites in the Hishikari mine area (⁸⁷Sr/⁸⁶Sr = 0.704373 - 0.704500; ɛNd = -0.04 to +0.5) suggesting a similar mantle source. In the Hishikari mine area, the andesites show higher ⁸⁷Sr/⁸⁶Sr values (0.704701 to 0.706168) and lower ɛNd values (-5.3 to +0.3) than the basaltic andesites. The andesites fall along a mixing hyperbola between the basaltic andesites and the Shimanto sedimentary basement rocks suggesting that the parental magmas interacted with sediments from the Shimanto basement. In samples collected west of Hishikari, Fe²⁺/Mg ratios of the olivine equilibrium melt show that olivine crystallized in a more evolved composition than the bulk rock, suggesting early crystallization of Cpx likely due to elevated water contents in the parental magmas. Cpx exhibits weak Eu anomalies in the mafic samples (Eu/Eu* = 0.64 to 1.1) and no correlation with Sr, suggesting that the parental magmas were mildly oxidized to contain high Eu³⁺/Eu. A clear positive relationship between Ni and Fo components in olivine, the lack of sulphides observed in samples and low bulk rock S content (<0.01wt%) suggests low S contents in the parental magmas. Our samples are similar in lithology, mineralogy and bulk rock compositions to two samples from the Yamagano Kinzan andesite as well as Pliocene-Pleistocene volcanic rocks in large volcanic fields of Hisatsu and Hokusatsu in Kyushu. These geochemical similarities are possible evidence for a similar mantle source beneath south-central Kyushu
The Relative Stability of the Dark Triad of Personality
No full textThe Dark Triad (DT) is a controversial personality profile that includes subclinical traits of psychopathy, Machiavellianism, and narcissism. In recent years, the DT has become a significant concern for social scientists, as its traits are associated with disagreeableness and a socially competitive and dominant interpersonal style. The DT is potentially problematic considering that psychopathy, Machiavellianism, and narcissism are traits, and as such, are supposedly generally stable (i.e., consistent) across time and situations. Nonetheless, personality can change to adapt to, and manifest in, specific situations or moments, known as personality states. Thus, personality is at once, stable and changing over time and in different situations, which is referred to as the relative stability of personality. This relative stability has already been demonstrated with normative traits from the Big Five or Five Factor Model of personality. However, it has rarely been studied with the DT of personality. My doctoral thesis addresses this research caveat by first exploring patterns of stability and change of the DT traits through short time-period (Article 1) and then testing it across situations (Article 2). The results from this doctoral thesis showed greater DT state stability over a ten-day period due to personality traits, despite some state variability due to changes in situations. This was comparable to patterns of relative stability of Big Five Agreeableness. Furthermore, results demonstrated that brief engagement in fictitious social situations did not prompt significant differences in DT states, suggesting that more prolonged and in-depth exposure might be necessary to observe more significant changes in DT states. Overall, these results are aligned with trait theories of personality that consider traits as stable personality attributes
Syntax of Classifiers and Measure Words in Chinese and Beyond
No full textThis thesis deals with classifiers and measure words in Chinese, focusing specifically on Mandarin, Cantonese and Northern Wu. It provides a typological account of the variation observed in these languages and offers both a synchronic and a diachronic approach to syntactic variation.
Numeral classifiers are known to occur obligatorily in quantified noun phrases in Chinese (Chierchia 1998: 354-355). Different accounts have been proposed in the literature for these: some researchers propose a left-branching structure in which the classifier merges with the numeral (Greenberg 2013 [1974]; Her 2017), while others argue for a right-branching structure in which the classifier merges directly with the head noun (Cheng & Sybesma 1999; Simpson 2005). In addition, it has been observed that Chinese languages have measure words such as shao 'spoonful', and it has been proposed that they are syntactically identical to classifiers (Her 2017).
In this thesis, I propose that classifiers should be distinguished from measure words, and that both structures are needed for a complete analysis of the classifiers and measure words in Mandarin, Cantonese and Northern Wu. I hypothesize that classifiers and measure words can be syntactically different, and that they tend to undergo different types of diachronic changes, which may account for their synchronic syntactic differences.
These hypotheses are tested against data collected from native speakers of Northern Wu and Cantonese with a grammaticality judgement task; the historical data come from previous descriptive works and corpora of Old and Middle Chinese. The findings include a systematic syntactic difference between classifiers and measure words in Cantonese and Northern Wu (which is not found in Mandarin), as well as several types of diachronic changes that can be subsumed under grammaticalization.
Based on those data, I argue that classifiers differ syntactically and categorially from measure words in Cantonese and Northern Wu, and that they are syntactically distinct from Mandarin classifiers. They are associated with different structures: classifiers and measure words in Mandarin as well as Cantonese and Northern Wu measure words occur in a left-branching structure, while classifiers in Cantonese and Northern Wu are used in a right-branching structure. These differences between the three Chinese languages are attributable to the diachronic changes that they underwent, and I propose a correlation between the syntactic behaviour of classifiers and their level of grammaticalization.
This thesis on Chinese classifiers provides original work in that synchronic syntactic properties are directly linked with diachronic change and in proposing a universal left-branching structure for measure words and language-specific structures for classifiers. My theory on Chinese classifiers has several major theoretical consequences. First, classifiers and measure words are associated with different functional heads. Second, the classifiers that occur in right-branching structures in quantified noun phrases are expected to show other signs of grammaticalization (e.g. phonological reduction). Third, numeral classifiers and number morphology are not in complementary distribution (Bisang 2012), and their co-occurrence is costly but not intrinsically prohibited. Last, some properties of classifiers could be analyzed as emergent rather than fixed (Hopper 1998), and they explain why classifiers undergo some changes diachronically and bear certain vestigial similarities to measure words despite more systematic differences
Exploring the potential for disability justice within Canadian non-profits
No full textThis thesis examines the implementation of a disability justice framework within non-profit organizational contexts. While the disability rights movement in Canada has achieved significant legal and policy victories, disability justice emerged as an alternative framing to center the experiences of disabled people of color and others marginalized within rights-based approaches (Sins Invalid, 2019). Despite growing scholarly attention to disability justice, there has been limited research exploring how the principles of disability justice translate into the internal organizational environment, particularly within disability non-profit settings. These types of organizations have historically been part of the disability rights movement and shaped by rights-based paradigms but are experiencing increased demands and pressure, and operating in survival mode (Kelly, 2018, 2020).
Considering this broader context, this research explores the possibilities and barriers for a disability non-profit organization to adopt a disability justice framework. More specifically, it looks at how organizational transformation can be a strategy for social change by focusing on disability justice in the internal environment. Through a comparative case study of two disability-focused non-profit organizations, this research employed participatory methods to investigate the challenges and opportunities for operationalizing the framework. Ultimately, this study revealed how bureaucracy, neoliberal logics, and an entrenched rights-based framework reinforce each other to constrain non-profit organizations' capacity to fully embrace disability justice in their policies, structure, practices, and processes. Opportunities also emerged to help organizations navigate and maneuver around the external forces. Through a comparison between the organizations, and participant perspectives, a combination of cultural and structural change provided avenues for challenging ableism and pursuing social transformation from the inside
Upcycling Dairy Industry Byproducts: Transformation of Distillery Stillage into Fertilizer
No full textThe dairy industry is dealing with the disposal of a costly by-product, called milk permeate, when creating a variety of dairy products such as cheese, yogurt and butter. Milk permeate is a solution high in lactose that is costly to dispose of because of its high biological oxygen demand (BOD) and chemical oxygen demand (COD).
We addressed this issue in two parts; one by using milk permeate with a lactose-fermenting yeast, Kluyveromyces marxianus, to create ethanol to be sold vodka, by fermentation and distillation processes. The fermentation and distillation eliminates the lactose from solution, but it creates a secondary waste product that is high in yeast biomass, therefor still contains high BOD and COD. This secondary by-product, distillery stillage, was repurposed into a fertilizer and tested in greenhouse cultivation of Capsicum annuum (bell pepper).
The transformation of milk permeate was successful at creating a profitable ethanol product and reducing waste, after fermentation with K. marxianus. The usage of repurposed distillery stillage as a fertilizer shows promise as it was applied to C. annuum plants in a greenhouse setting and showed results comparable to commercial fertilizer available on the market.
The work accomplished demonstrated how transformation and upcycling successfully reduced waste in the dairy industry by applying it to two different waste products, milk permeate, followed by distillery stillage. This has reduced the environmental footprint of dairy waste streams and created new revenue opportunities while promoting sustainable agriculture