Abstract Background: We developed and validated clinical vignettes to assess decision-making preferences (DMP) among adults with cancer across the cancer care continuum. We aimed to adapt the Autonomy Preferences Index (API) to better reflect the complexities of cancer care, incorporating scenarios that span from prevention to end-of-life care. Existing tools often focus on acute conditions and short-term decisions, leaving a gap in addressing long-term cancer-related decision-making. Methods: Using a mixed-methods approach and following COSMIN methodology, we designed clinical vignettes around the cancer care continuum (CV-Ca) to represent real-life cancer care decisions. We then evaluated their content validity by having ten experts rate their relevance and clarity to obtain a Content Validity Index (CVI). Additionally, we conducted semi-structured interviews to gather qualitative insights. Based on this expert feedback, we revised the CV-Ca to ensure they aligned with current clinical practice and effectively captured the complexities of cancer decision-making. Results: The final CV-Ca demonstrated strong content validity, with improved CVI ratings after revisions. By using both quantitative and qualitative methods, we comprehensively assessed the vignettes and ensured their relevance and clarity. This study is the first to create vignettes that measure DMP across the entire cancer continuum, addressing a significant gap in existing tools. Conclusions: The validated CV-Ca can potentially provide healthcare providers with a reliable instrument to assess DMP in patients with cancer throughout their care journey. This tool supports shared decision-making, helping clinicians ensure that care aligns with patients' values and preferences. It has significant implications for improving patient-centered care in oncology, potentially enhancing treatment adherence, satisfaction, and outcomes. Future steps will involve piloting the tool in clinical settings and further assessing its reliability and construct validity. / Thesis / Master of Health Sciences (MSc) / Lay Abstract We developed and tested clinical vignettes to better understand how involved adult patients with cancer want to be when making decisions about their care. These vignettes cover different stages of cancer care, from prevention to end-of-life, addressing gaps in existing instruments that mainly focus on acute conditions and short-term decisions. Using both quantitative and qualitative methods, we asked ten experts, including healthcare providers and patients, to assess the relevance and clarity of the vignettes. Based on their feedback, we revised the vignettes to ensure they accurately represent real-life cancer care decisions. The final set of vignettes demonstrated strong content validity, meaning they effectively capture patient decision-making preferences throughout the cancer journey. This instrument can help healthcare providers engage in shared decision-making, ensuring care aligns with patients’ values and preferences. Next step is to pilot the instrument in clinical settings to test its effectiveness in improving cancer care.

Objective: To explore differences between conventional medicine (COM) and complementary and alternative medicine (CAM) regarding the attitude toward and the perceived use of shared decisionmaking (SDM) from the health professional perspective. Methods: Thirty guideline-based interviews with German GPs and nonmedical practitioners were conducted using qualitative analysis for interpretation. Results: The health professional–patient-relationship in CAM differs from that in COM, as SDM is perceived more often. Reasons for this include external context variables (e.g. longer consultation time) and internal provider beliefs (e.g. attitude toward SDM). German health care policy was regarded as one of the most critical factors which affected the relationship between GPs and their patients and their practice of SDM. Conclusion: Differences between COM and CAM regarding the attitude toward and the perceived use of SDM are attributable to diverse concepts of medicine, practice context variables and internal provider factors. Therefore, the perceived feasibility of SDM depends on the complexity of different occupational socialization processes and thus, different value systems between COM and CAM. Practice implications: Implementation barriers such as insufficient communication skills, lacking SDM training or obedient patients should be reduced. Especially in COM, contextual variables such as political restrictions need to be eliminated to successfully implement SDM.

Objective: To explore differences between conventional medicine (COM) and complementary and alternative medicine (CAM) regarding the attitude toward and the perceived use of shared decisionmaking (SDM) from the health professional perspective. Methods: Thirty guideline-based interviews with German GPs and nonmedical practitioners were conducted using qualitative analysis for interpretation. Results: The health professional–patient-relationship in CAM differs from that in COM, as SDM is perceived more often. Reasons for this include external context variables (e.g. longer consultation time) and internal provider beliefs (e.g. attitude toward SDM). German health care policy was regarded as one of the most critical factors which affected the relationship between GPs and their patients and their practice of SDM. Conclusion: Differences between COM and CAM regarding the attitude toward and the perceived use of SDM are attributable to diverse concepts of medicine, practice context variables and internal provider factors. Therefore, the perceived feasibility of SDM depends on the complexity of different occupational socialization processes and thus, different value systems between COM and CAM. Practice implications: Implementation barriers such as insufficient communication skills, lacking SDM training or obedient patients should be reduced. Especially in COM, contextual variables such as political restrictions need to be eliminated to successfully implement SDM.

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Healthcare decisions should be evidence-based and patient-centered. Patient-centered care is about providing quality care with the patient as the focus. The provider has to incorporate the patient’s values, preferences, and objectives into the clinical decision. Traditionally, clinical decisions were made by the provider alone. Healthcare decisions are complex, due to the multiple objectives and potential serious outcomes, making it difficult for the provider to facilitate shared decision-making with the patient. Decision support software can assist with decision-making, by letting the patient incorporate their preferences and perform the decision analysis. Annalisa is a decision support software that has been developed for this purpose. The objective of this thesis is to analyze Annalisa, from a multi-criteria decision analysis (MCDA) perspective and to discuss the tool’s ability to assist with healthcare decisions in a patient-centered care setting. Annalisa’s elements and method were reviewed, using information from the developers. The input data and results from two healthcare studies using Annalisa were used to analyze the tool from a MCDA and patient-centered care perspective and discuss the tool’s ability to provide aid in healthcare decisions. The tool’s method of simple additive weighting (SAW) was compared to the expected utility function using a decision tree. The developers of Annalisa focused on the simplicity and ease of use, rather than creating a new kind of decision support tool. The two example studies indicated problems with the tool’s ability to incorporate the patient’s preferences and values. However, considering that one of the goals with using a decision aid software in healthcare is to assist with decision analysis after the patient has been presented with the information in the traditional healthcare decision guide, Annalisa makes an interesting attempt to provide aid in that next step of the decision-making process.

O presente trabalho tem por escopo o estudo do princípio do respeito à autonomia do paciente à luz das recentes alterações trazidas pelo novo CEM Resolução do Conselho Federal de Medicina nº 1.931, de 17 de setembro de 2009 , que prestigia a autonomia do paciente e propõe um novo formato para a relação médico-paciente, impondo novas posturas tanto ao médico como ao paciente, e privilegia sua autodeterminação, ao mesmo tempo em que o obriga à tomada de decisões e à assunção de responsabilidade compartilhada quanto ao processo terapêutico. O objeto do estudo é a nova relação médico-paciente sob o enfoque da autonomia do último, ressaltando-se a responsabilidade compartilhada com o médico em relação à tomada de decisões atinentes ao processo terapêutico, às escolhas terapêuticas, bem como os limites e o conteúdo do poder de decidir e sua autonomia diante da enfermidade e da terminalidade da vida. Nesta hipótese, a reflexão concentra-se nos cuidados paliativos e na adoção de diretivas prévias estatuídas pelo paciente a serem observadas pelo médico e por eventual terceiro responsável por aquele, caso ele não possa manifestar sua vontade durante cuidados paliativos ou situações que revelem iminente terminalidade. / This proposal aims to study the principle of respect for patient autonomy in light of recent changes introduced by the new CEM Resolution of the Federal Medical Council nº 1931 of September 17, 2009 which honors the patients autonomy and proposes a new format for the doctor-patient relationship, imposing new attitudes to both the patient and physician, emphasizes self-determination and, at the same time that forces decision making and the assumption of shared responsibility as to the therapeutic process. The object of the study is the new doctor-patient relationship from the perspective of this autonomy, emphasizing shared responsibility with the physician regarding decisions pertaining to the therapeutic process, the therapeutic choices, and the limits of power and content and their autonomy to decide on the terminally ill and life. In this case, reflection focuses on palliative care and the adoption of policies laid by the previous patient to be seen by the doctor and by any third party responsible for that, if he can not express his desire for palliative care or situations that reveal impending finality.

The national recommendations for use of the prostate specific antigen (PSA) test for prostate cancer screening have been modified over the years as scientific evidence emerged. Current screening recommendations discourage widespread PSA screening for men at low to average risk, but provide specific guidelines for shared-decision making between men and their health providers about the benefits and risks of PSA testing. This study was an examination of relationships between men’s assessment of the quality of their care and communication with their health providers, the extent to which providers engage men in recommended discussions about PSA testing, and factors associated with shared-decision making and PSA testing. Secondary data from the U.S. Health Information National Trends Survey 4, Cycle 2 that included men with no history of prostate cancer and in the recommended age ranges for prostate cancer screening were analyzed (N=777). Non-Hispanic white men rated their quality of care higher than men of other races (c2 (49, n=635) = 7.23, p = 0.0098), whereas Hispanic men gave the lowest ratings compared to other men (c2 (49, n=635) = 5.42, p = 0.024). Previous PSA testing was reported by 64% of the men, 56% of whom stated that they discussed screening with their provider and 80% reported that they were asked if they wanted to have the test done. However, only 21% - 39% reported having ever discussed the pros and cons of PSA testing. Discussing PSA testing with a provider was the strongest predictor of obtaining the test (OR=69.5, CI = 23.6 – 204.6) but the effect was significantly modified when providers and patients engaged in the shared-decision making process (OR = 47.42, CI = 14.91 – 150.74). Age, education level and perceived quality of care were consistent, positive predictors of PSA testing. These results indicate there is a gap in provider-patient discussions about PSA screening and suggest that health providers may not be following the recommended guidelines for the content of the discussions needed to facilitate shared-decision making. Effective provider-based interventions to increase shared-decision-making about PSA testing are needed if the national objectives for prostate cancer screening are to be met.

Background Non-adherence to evidence based secondary prevention medicines (SPM) by coronary heart disease (CHD) patients limits their expected benefits and may result in a lack of improvement or significant deterioration in health. This study explored self-reported non-adherence to SPM, barriers to adherence, and the perception that patients in West Yorkshire have about their medicines in order to inform practice and improve adherence. Methods In this cross-sectional study a specially designed postal survey (The Heart Medicines Survey) assessed medicines-taking behaviour using the Morisky Medicines Adherence 8 items Scale (MMAS-8), a modified version of the Single Question Scale (SQ), the Adherence Estimator (AE), Beliefs about Medicines Questionnaire(BMQ) and additional questions to explore practical barriers to adherence. Patients were also asked to make any additional comments about their medicines-taking experience. A purposive sample of 696 patients with long established CHD and who were on SPM for at least 3 months was surveyed. Ethical approval was granted by the local ethics committee. Results 503 (72%) patients participated in the survey. 52%, 34% and 11% of patients were prescribed at least four, three and two SPMs respectively. The level of non-adherence to collective SPM was 44%. The AE predicted that 39% of those had an element of intentional non-adherence. The contribution of aspirin, statins, clopidogrel, beta blockers, angiotensin converting enzyme inhibitors (ACEI) and angiotensin receptor blockers (ARBs) to overall non-adherence as identified by the SQ scale was 62%, 67%, 7%, 30%, 22% and 5%, respectively. A logistic regression model for overall non-adherence revealed that older age and female gender were associated with less non-adherence (OR = 0.96, 95% CI: 0.94, 0.98; OR = 0.56, 95% CI: 0.34, 0.93; respectively). Specific concern about SPM, having issues with repeat prescriptions and aspirin were associated with more non-adherence (OR = 1.12, 95% CI: 1.07, 1.18; OR = 2.48, 95% CI: 1.26, 4.90, OR = 2.22, 95% CI: 1.18, 4.17). Other variables were associated with intentional and non-intentional non-adherence. 221 (44%) patients elaborated on their medicines-taking behaviour by providing additional comments about the need for patient tailored information and better structured medicines reviews. Conclusions The Medicines Heart Survey was successful in revealing the prevalence of self-reported non-adherence and barriers to adherence in our population. Healthcare professionals should examine specific modifiable barriers to adherence in their population before developing interventions to improve adherence. Conducting frequent structured medicines-reviews, which explore and address patients' concerns about their medicines and healthcare services, and enable them to make suggestions, will better inform practice and may improve adherence.

ABSTRACT THE ACTUAL AND DESIRED LEVELS OF SHARED DECISION MAKING IN PUBLIC SCHOOLS IN &Ccedil / ANKAYA DISTRICT OF ANKARA G&uuml / nal, Zafer M.S., Department of Educational Sciences Supervisor: Prof. Dr. Hasan SimSek September 2005, 96 pages The purpose of the study is to investigate the actual and desired levels of shared decision making in public schools in &Ccedil / ankaya district of Ankara, Turkey. The sample of this study consisted of 372 teachers from 10 public basic schools and secondary schools in &Ccedil / ankaya district of Ankara. Shared Education Decisions Survey- Revised by Prof. Dr. Donna Ferrara was used to collect data. The results of the study showed that the teachers working in public schools of &Ccedil / ankaya district sometimes participate in the decision making process. The level of participation increases about the parental involvement, pupil personnel and student achievement issues. However, it is understood that teachers rarely participate in the decisions relating to budget, school/community relations, staff development and policy issues. On the other hand, when the results of the study are considered, it is apparent that teachers in public schools in &Ccedil / ankaya district always desire to participate in the decision making processes in their schools. The parental involvement, student achievement, pupil personnel and curriculum/ instruction areas, which are directly related to teaching, are the areas teachers most desire to participate in. Keywords: Shared decision making, participation, participative decision making, public education institutions, teacher participation.

Engaging youth with Type 1 diabetes (T1D) in the self-management of daily tasks and decision- making provides opportunities for positive health outcomes. However, emerging adulthood and care transitions are associated with decreased clinic attendance and diabetes complications. The process of shared decision making (SDM) comprises four key elements – acknowledge, consider, decide, act - and is identified as an optimal approach to making self-management decisions, yet it has been difficult to implement in practice. Personal health record (PHR) technology is a promising approach for overcoming such barriers. Still, today PHRs have yet to root themselves into care and present an opportunity for improvement in SDM and engagement in self-management decision making. Using a sequential two-phased investigation, this dissertation describes how PHRs can be designed to enable SDM and integrated into clinical practice to engage youth with T1D in self-management decision making. Phase 1 proposed an integrated SDM–PHR (e-PHR) functional model justified by youth with T1D (n=7) and providers (n=15) via a user-centered design approach. Located within an interconnected EHR ecosystem, e-PHR integrates 23 PHR functionalities for the SDM process, whereby each SDM element was mapped to PHR functions with a moderate level of agreement between patients and providers (Cohen's kappa 0.60-0.74). The Phase 2 mixed methods, pre-implementation evaluation utilized an online measurement instrument and survey and individual interviews, underpinned by the Normalization Process Theory (NPT), to describe the four cognitive and behavioural processes (coherence, cognitive participation, collective action, reflexive monitoring) known to influence the success of complex socio-technical implementations. Youth with T1D (n=8), providers (n=11), and EHR/clinical leaders (n=8) in British Columbia participated. Reliability tests of NPT-based instrument negated the use of scores for the coherence and reflexive monitoring constructs. Qualitative results indicated that e-PHR made sense as explained by two themes for ‘Coherence’: game changing technology and sensibility of change. Participants strongly agreed (mean score=4.6/5) with ‘Cognitive Participation’ processes requiring an investment in commitment, explained by two themes: sharing ownership of the work and enabling involvement. Weak agreement (mean score=3.6/5) was observed with ‘Collective Action’ processes requiring an investment in effort, explained by one theme, uncovering the challenge of building collective action, and 3 sub-themes, assessing fit, adapting to change together, and investing in the change. Participants appraised e-PHR as explained by two themes for ‘Reflexive Monitoring’: reflecting on value, and monitoring and adapting. Finally, participants strongly agreed (mean score=4.5/5) that e-PHR would positively affect engagement in self-management decision making in two themes: care is efficient and care is person-centred. The establishment of a e-PHR functional model is a precursor to system design requirements. Using the NPT framework, findings from the process evaluation indicated participants invest in sense-making, commitment and appraisal work of this technology. However, successful integration of e-PHR into clinical practice to positively affect engagement in self-management decision making will only be attained when systemic effort is invested to enact it. Further research is needed to explore this gap to inform priorities and approaches for future implementation success. / Graduate