Patient-Reported Outcome Measures (PROMs) are increasingly used in health services research and clinical practice for the quantification of patient experiences, including quality of life, mood (e.g. depression), and satisfaction with services. Such PROMs usually take the form of questionnaires. The underlying measurement model is derived from psychometric theory, specifically Classical Test Theory (CTT). This model requires statistical analysis of questionnaire data to establish the quality of data so collected, with emphasis on the reliability (reproducibility) and validity (domain-specific measurement) of the data.

Health research is the single vehicle for uncovering the varying causes of disease or illness, understanding the broader determinants of health, and discovering new or to validating traditional ways of treating the individuals who suffer from these conditions. Thus, health research activities are at the heart of medical, health and scientific developments. While health research activities exemplify some of the greatest hopes for improved health-care, they also highlight public concerns for the protection of personal health information (PHI). More specifically, advances in modern information technology and the increasing pace of international collaborative studies raise challenging issues regarding privacy protection in health research. The extensive quantities of data housed in general-use databases and electronic health records (EHRs) are two frequently cited examples of “electronic health information” that are now increasingly available to researchers globally . For example, individual discrete studies are expanding into long-term prospective disease or treatment databases without clear research questions and involving multiple research teams and jurisdictions. As well, EHRs are increasingly taking a prominent role in Western industrialized nations such as England, Australia, New Zealand, Germany, the Netherlands, the United States, as well as Canada. The expected large scale demand for the secondary uses of personal health information (PHI) from electronic health records represents another significant challenge to privacy. EHRs facilitate clinical and population-based health research not only in terms of secondary uses, such as retrospective observational studies, but also for prospective cohort studies. In Canada today, there are two documents that provide direction that is applicable at a national level to privacy protection practices in health research: The Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS 2) and the CIHR Best Practices for Protecting Privacy in Health Research (CIHR BPPP). The TCPS 2, a policy document, is the most influential Canadian policy applicable to the ethics of research with human participants and widely followed by Canadian researchers and institutions. Conversely, use of the CIHR BPPP is purely optional. Canadian REBs are responsible for much of the governance of privacy, confidentiality and security in health research. However, the extent to which they apply and utilize the privacy provisions from the TCPS 2 and CIHR BPPP in their protocol requirements is not known. This thesis provides a descriptive comparative study of the international and Canadian contexts for privacy protection in health research and produces a greater understanding of two Canadian stakeholder groups: the Canadian public, whose participation and trust is imperative for valid research; and Canadian Faculty of Medicine (FoM) university biomedical REBs with whom much responsibility for ensuring appropriate protection of privacy and confidentiality in health research rests.

<p>Objective: We compared the performance of PLUS to that ofthe Cochrane Trial Registry (CCTR), Medline and EMBASE for locating studies added during an update of Cochrane Systematic reviews. We investigated the effect of excluding studies not found in PLUS on meta-analysis results.</p> <p>Study Design and Setting: A sample of new studies in updated Cochrane Systematic Reviews was used to establish a reference standard. Searches were performed for each study in PLUS, CCTR, Medline and EMBASE. Where a primary study was not indexed in PLUS, we examined the effect on the review of excluding the study. We compared the result of each selected meta-analysis including only new studies obtained in PLUS to the result using only those not found in PLUS (non-PLUS) via ratio of odds ratios (ROR). The sensitivity of Hedges filters for randomized trials was measured.</p> <p>Results: Ninety-eight updated reviews were identified and 87 included a meta-analysis suitable for calculation of RORs. The relative recall rates for PLUS, CCTR, Medline and EMBASE were 23%, 95%, 90% and 86%, respectively. PLUS contained all new studies for 13 of74 reviews. No statistically significant difference between PLUS and non-PLUS new studies was found when RORs were pooled across 39 reviews (ROR 0.929; 95% CI, 0.79-1.093). Nineteen updated reviews had no new studies indexed in PLUS. Hedges filters for Medline demonstrated 99.4% sensitivity to detect new trials.</p> <p>Conclusions: PLUS included less than a quarter of the new studies in Cochrane Review updates but the majority of reviews in our sample appeared unaffected by the use of PLUS as a sole source of literature. This may be because PLUS captures the most important studies although no predictors of PLUS retrieval performance were found. Reviewers should consider adopting PLUS and Hedges filters to keep their reviews up to date.</p> / Master of Science (MS)

<p>This thesis is based on 32 semi-structured phenomenological interviews conducted at a large Canadian ambulatory cancer centre serving 2.3 million people in Ontario. The primary objective of this program of study was to explore cancer care employees' perceptions of a Quality of Work-Life (QWL) Project where they were the subjects of research and their perceptions of clinical research where patients were the subjects of research. Three secondary objectives were to explore: (a) perceptions of the participatory approach to research from the perspective of employees on the steering committee of the QWL Project; (b) perceptions of the QWL Survey from the perspective of employees who completed the survey; and (c) perceptions of clinical trials from the perspective of nurses and radiation therapists who treated trial patients Findings had important implications for the conduct of workplace and clinical research in a cancer care environment. Some of the main findings included: (a) It may be difficult to conduct participatory research in a work environment given that power and a hierarchy of relationships interfere with employees being considered equal; (b) Many QWL issues presented by employees were not captured in the QWL Survey. QWL researchers need to ensure that QWL measures are pertinent to a particular worksite and encompass all meaningful QWL issues of a given work environment; (c) Ethical concerns associated with clinical trials suggested that the clinical trials department should review trial procedures; (d) Workload concerns associated with clinical trials implied that employees should be credited for their present involvement in trials; and (e) Clinical research was perceived to be more important than the QWL Project, party due to the perception that patient interests outweighed those of employees. In general, employees' perceptions of clinical and workplace research suggested that identification with the cancer centre as a clinical research organization contributed significantly to employees' QWL.</p> / Doctor of Philosophy (PhD)

<p>Hydrocephalus is a common condition of childhood. Attempts to measure the health status of children with hydrocephalus have traditionally relied on surgical outcomes, non-specific generic health outcomes, or very specific neuropsychological measures. This work describes the development of a new disease-specific health status outcome measure for children with hydrocephalus--called the Hydrocephalus Outcome Questionnaire (HOQ). This work begins with a discussion of several methodological issues relevant to health status measurement, highlighting certain points of controversy. This is followed by a review of the methodology and the results of various stages of development of this new health status measure. This includes the stages of concept development, item generation, item reduction, reliability testing, and validity testing. The final section describes the use of some different approaches to providing interpretability to the new outcome measure. This work was approved by the Research Ethics Board at the Hospital for Sick Children, Toronto. The result of this work was the 60-item Hydrocephalus Outcome Questionnaire. It demonstrated very good psychometric properties and was well received by the parents of children with hydrocephalus, who are the primary respondents. It is hoped that this will serve a useful role as a much-needed outcome measure for pediatric hydrocephalus.</p> / Doctor of Philosophy (PhD)

Background Risks associated with Zika virus (ZIKV) transmission in the Americas have been discussed widely in the media as several European athletes declined to participate in the 2016 Summer Olympic Games. Since risk perceptions of individuals in unaffected areas are unknown, we assessed the risk perceptions of ZIKV and related behaviour in Lower Saxony, Germany, with a specific focus on pregnant women and their partners. Methods In May 2016, we surveyed 1,037 participants aged 15-69 years of an online panel (addressing hygiene and preventive behaviour regarding infections) in Lower Saxony with respect to their risk perceptions related to ZIKV. We additionally included 26 expectant parents who were recruited at antenatal preparation courses in Braunschweig and Hannover between May and July 2016. Results Six hundred fifty-five (69.1%) of the panel participants had ever heard about ZIKV. About 8% of the study participants reported to be concerned about ZIKV. Pregnant women had the highest odds of reporting concern about ZIKV (OR: 6.24; 95% CI: 2.94-13.26, reference: non-pregnant women). The vast majority of participants (79%) would travel to the Olympics if they won a free trip; this proportion was lower in currently pregnant women (46%). Risk perceptions towards ZIKV were considerably lower than those towards Ebola during the 2014 epidemic. Conclusion This study showed that fear of contracting ZIKV is not a major deterrent for travelling to high-risk areas. Pregnant women are appropriately concerned about the risk of ZIKV. Studies modelling the further spread of ZIKV need to account for these results.

The re-conceptualisation of stroke unit provision towards acute and hyperacute care has been a relatively recent development in the United Kingdom. This hermeneutic phenomenological study aimed to explore how the acute stroke unit (ASU) experience, as the phenomenon of interest, was meaningfully lived from a human lifeworld perspective. Eight participants: four stroke survivors and four healthcare practitioners: took part in semi-structured interviews, and if they agreed, an optional creative element. Interviews were recorded then transcribed. Detailed hermeneutic analysis drawing on interpretative phenomenological analysis (IPA) was undertaken firstly on each person’s account, and then across the collective from each perspective. An additional close textual reading was developed for one stroke survivor and one healthcare practitioner. A particular feature of the analysis was its influence in generating an innovative graphic interpretation of the research findings. The stroke survivors experienced the ASU as a lived space in two differentiated forms. The ASU holding space, through the spatial practices of nurses, and others, including similar others (patients), was understood to provide them with protection and safe haven; holding them intimately but also at a distance, so that they could think, make sense, plan and work towards transition. The transitional space of the ASU was experienced by three of them in more disparate ways, and represented how they transitioned their self (for protection, necessity and for recovery) in response to the stroke, the hospital space and the spatial practices of the ASU. The healthcare practitioners experienced the ASU as a space that they produced and appropriated for themselves and others. This was intertwined with their work as existential project; through their relationships with others, and their contribution to patients’ transitional work, they were understood to experience authenticity and belonging. This project was always in the making, and was undertaken amidst the day-to-day pressures on the unit. As a result, three of the health practitioners looked to make sense, navigate, and survive the vulnerability they experienced in relation to their meaningful work, as part of their ASU experience. Further synthesis of these two horizonal1 perspectives elucidated 3 key areas of new insight and understanding: the spatiality of the lived experience of the acute stroke unit, suffering and thriving as a human being, and the intertwining of multiple selves in time and place. The implications of this new knowledge for clinical practice, education, and research are further discussed in this thesis.

Thesis (Ph.D. (Nursing))--North-West University, Potchefstroom Campus, 2007.

Professionals in the medical field often question the value and contribution nurses make through research. To counteract these perceptions, to create awareness of nurses of their role in contributing to the body of knowledge of nursing and to improve the implementation of research findings, it is important to design and implement a strategy for the promotion of all aspects of research by nurses. This research intended to describe and explore the contribution of research by nurses in South Africa. This was done by exploring perceptions of stakeholders, as well as analysing the nature of research by nurses listed in the Nexus database and published articles. This information was used to explore and describe a strategy to promote nurses' research contribution, and to explore the feasibility of this strategy in the Southern District of the North West Province. An explorative and descriptive, qualitative and quantitative design was employed in this research. A literature study preceded the execution of the research. The research was conducted in three phases. The first phase consisted of a Delphi study, which resulted in the formulation of a proposed strategy. In a follow-up phase, eleven focus group interviews were conducted with groups in the Southern District of the North West Province to verify the proposed strategy and to explore the feasibility of the strategy. During the last phase a profile of research conducted by nurses in South Africa was composed . Information gathered through all the phases of the research revealed similar results about important aspects of research by nurses. This contributed mainly to the development of a strategy to promote nurses' research. This strategy was verified and refined and is recommended for implementation in the Southern District of the North West Province, with the intention to evaluate the impact of the strategy for refinement and wider application. / Thesis (Ph.D. (Nursing))--North-West University, Potchefstroom Campus, 2007.

Professionals in the medical field often question the value and contribution nurses make through research. To counteract these perceptions, to create awareness of nurses of their role in contributing to the body of knowledge of nursing and to improve the implementation of research findings, it is important to design and implement a strategy for the promotion of all aspects of research by nurses. This research intended to describe and explore the contribution of research by nurses in South Africa. This was done by exploring perceptions of stakeholders, as well as analysing the nature of research by nurses listed in the Nexus database and published articles. This information was used to explore and describe a strategy to promote nurses' research contribution, and to explore the feasibility of this strategy in the Southern District of the North West Province. An explorative and descriptive, qualitative and quantitative design was employed in this research. A literature study preceded the execution of the research. The research was conducted in three phases. The first phase consisted of a Delphi study, which resulted in the formulation of a proposed strategy. In a follow-up phase, eleven focus group interviews were conducted with groups in the Southern District of the North West Province to verify the proposed strategy and to explore the feasibility of the strategy. During the last phase a profile of research conducted by nurses in South Africa was composed . Information gathered through all the phases of the research revealed similar results about important aspects of research by nurses. This contributed mainly to the development of a strategy to promote nurses' research. This strategy was verified and refined and is recommended for implementation in the Southern District of the North West Province, with the intention to evaluate the impact of the strategy for refinement and wider application. / Thesis (Ph.D. (Nursing))--North-West University, Potchefstroom Campus, 2007.