<p><em>Objectives: </em> (i) To determine the types and impact of uncertainty in the decision-making process of policy-makers regarding the implementation of the human papillomavirus (HPV) vaccine. (ii) To determine the relative strengths and limitations of qualitative and quantitative knowledge synthesis methodologies as well as their contributing role to the policy-making regarding the HPV vaccine.</p> <p><em>Methods</em>: A systematic review and a meta-ethnography were conducted concurrently. Four different search strategies, of nine different databases, were used to target all potential quantitative and qualitative literature published from 1990 to 2011. Studies were selected after abstract and full-text screening by two reviewers, with disagreements resolved by consensus. English language studies of any study design that addressed the HPV vaccine and policy were eligible for inclusion. Quality appraisal of included studies was undertaken using available criteria and tools according to study design. The criteria sets by Tong and colleagues and CASP were used for the qualitative literature while the economic evaluations were appraised with criteria set by Nujiten and colleagues. Quality of the cross-sectional study was not systematically appraised. Data extraction forms were designed for each study type. The data extracted included: study characteristics, types of uncertainty, number of types within each study, policy decision measured as the authors’ final recommendation, and perceptions of the confidence of these recommendations as rated by the reviewers. Chi-square tests were conducted to determine if presence or absence of uncertainty influenced decisions. Pearsons Correlations were conducted to determine the relationship between the amount of uncertainty and perceived certainty of the decision. The qualitative analysis was conducted using steps outlined by Noblit and Hare to determine how studies were related, to translate studies into one another, and to synthesize translations.</p> <p><em>Results:</em> Of the initial pool (n= 865), 21 studies met inclusion criteria and were considered; 17 quantitative and 4 qualititative. (i) The simulation cohorts of the decision analytic models did not vary by study appreciably. Chi square analyses failed to find evidence that policy decisions were influenced by presence or absence of uncertainty. Further, no statistically significant correlation was found between amount of uncertainty and perceived certainty with the funding decision. At least four types of uncertainties were identified in each qualitative study including but not exclusive to cost, public acceptance due to the sexually transmitted nature of HPV, as well as the health care system’s ability to implement and monitor the vaccine. After employing the Noblit and Hare translation process, four broad types were identified: uncertainties around managing different public acceptability viewpoints, the manufacturer’s role and input, the actual vaccine’s characteristics, and the system’s ability to implement a vaccination program. (ii) Specific and measurable outcomes could only be identified <em>a priori</em> for the quantitative studies due to the nature of questions asked. Locating relevant qualitative studies was more complex and time-consuming due to variation in the manner that each study’s defining features and information are catalogued and searched. A lack of reporting in both the qualitative and quantitative studies disabled a thorough assessment of methodological quality. Data extraction only varied in the manner that the data was recorded. The quantitative results consisted of specific types of data (numerical or categorical) while qualitative results were descriptive.Within data analysis, the types of uncertainty were determined through reciprocal translation while the impact of uncertainty was tested using two statistical techniques. These differences highlight the rigidity and flexibility of quantitative and qualitative literature, respectively.</p> <p><em>Conclusions:</em> Using both qualitative and quantitative methods enabled a more complete understanding of the role of uncertainty within the decision-making process. Regardless of the methodology used, each type of knowledge synthesis method provided relevant data in regards to the HPV vaccine; simply from different perspectives.</p> / Master of Science (MSc)

Evidence-based practice is an integral part of multi-disciplinary healthcare, but its routine clinical implementation remains a challenge internationally. Written asthma action plans are an example of sub-optimal evidence-based practice because, despite being recommended, these plans are under-issued by health professionals and under-used by patients/carers. This thesis is a critical analysis of the generation and implementation of evidence in this area and provides fresh insight into this specific theory/practice gap. This submission brings together, in five published papers, a body of work conducted by the candidate. Findings report that known barriers to action plan use (such as a lack of practitioner time) are symptomatic of deeper and more complex underlying factors. In particular, over-reliance on knowledge derived from randomised controlled trials and their systematic review, as the primary and sole source of evidence for healthcare practice, hindered the implementation of these plans. A lack of evidence reflecting the personal experience of using these plans in the real world, rather than in trial settings, contributed to a mismatch between what patients/carers want from asthma action plans and what they are currently being provided with by professionals. This submission illustrates the benefits of utilising a broader range of knowledge as a basis for clinical practice. The presented papers report how new and innovative research methodologies (including meta-ethnography and cross-study synthesis) can be used to synthesise individual studies reporting the personal experiences of patients and professionals and how such findings can then be used to better understand why interventions can be implemented in trial settings rather than everyday practice. Whilst these emerging approaches have great potential to contribute to evidence-based practice by, for example, strengthening the ‘weight’ of experiential knowledge, there are methodological challenges which, whilst acknowledged, have yet to be fully addressed.

Introduction: Les incertitudes des pronostics cliniques et les dilemmes moraux associés aux technologies des tests prénataux affectent les expériences et les processus décisionnels des femmes et des couples. D’une part, la validité des normes relatives au ‘consentement autonome’ et au conseil ‘non directif’ est remise en question. D’autre part, les aides à la décision sont prônées pour rehausser la prise de décision éclairée. L’objectif de ce mémoire est de construire un modèle de l’expérience des femmes et des couples qui font face aux tests prénataux afin d’identifier les facteurs qui amélioreraient les expériences, la prise de décision et le rôle des aides à la décision et informeraient le modèle de soin. Méthodologie: La modélisation et l’analyse des expériences des femmes et des couples qui affrontent les tests prénataux reposent sur une méta-ethnographie des études qualitatives et sur une analyse narrative thématique des études quantitatives. La critique d’un outil (PT) en matière de tests prénataux est également effectuée en ayant recours aux critères de qualité de l’International Patient Decision Aid Standards (IPDAS). Résultats: Un cadre conceptuel décrivant les expériences vécues est construit et l’analyse thématique le complète en soulignant que la prise de décision n’est que rarement éclairée. Les normes d’une ‘décision autonome’ et d’un ‘conseil non directif’ sont problématiques pour les femmes. Les aides à la décision amélioraient les scores de connaissances, sans pour autant modifier la perception du risque, ni les niveaux d'anxiété. L’outil PT favorise une prise de décision basée sur les préférences, mais les critères IPDAS sont difficilement applicables et leur rôle dans une décision de qualité est incertain. Discussion et conclusion: Les résultats éclairent les facteurs macro, méso et micro pouvant améliorer les expériences vécues des femmes et des couples et affecter la prise de décision et l’utilisation des aides à la décision. Un changement de paradigme préconisant le concept d’autonomie relationnelle dans le modèle de soins est suggéré. Dans le contexte des avancées en matière de test prénataux, une réévaluation des normes de pratique et de modèles de soin est requise. Le rôle des aides à la décision devra être élucidé. / Introduction: The clinical prognostic uncertainties and moral dilemmas associated with technological advances of prenatal testing impact the experiences and decision-making of women and couples. While the validity of the norms of ‘autonomous consent’ and ‘non-directive’ counseling is being questioned, decision aids are promoted to enhance informed decision-making. The goals of this thesis are to develop a model of the experiences of women and couples in prenatal testing so as to identify factors that may improve experiences, decision-making, the role of decision aids and inform the care model. Methods: A model of the experiences of prenatal testing is developed through a meta-ethnography of qualitative studies and a narrative synthesis of the themes explored in quantitative studies. A prenatal testing (PT) decision tool is critically assessed using the International Patient Decision Aids Standards (IPDAS) quality criteria for decision aids. Results: A conceptual framework of the experiences of women and couples in prenatal diagnosis is constructed and complemented by a narrative thematic analysis showing that decision-making is rarely informed and that the norms of an ‘autonomous decision’ and a ‘non-directive’ counselling are problematic for women. Decision aids improve knowledge scores, but do no modify risk perception or anxiety levels. A PT tool increases preference based informed decision-making, but quality criteria are not always applicable and their role in quality decision-making is unclear. Discussion and conclusion: The results highlight macro, meso and micro-level factors that may improve the experiences of women and couples and inform decision-making processes as well as the use of decision aids. A paradigm shift towards the concept of relational autonomy in the prenatal diagnosis model of care is suggested. Advances in prenatal testing require a re-evaluation of the norms of practice and care model. The role of decision aids requires further elucidation.

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