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.

Racial/ethnic disparities in cancer care are well documented in the research literature; however, less is known about the extent and potential source of cancer care disparities in the Veterans Health Administration (VA). In my first paper, I use logistic regression and hospital fixed effects models to examine racial disparities in 20 cancer-related quality measures and the extent to which racial differences in site of care explain VA cancer care disparities. I found evidence of racial disparities in 7 out of 20 cancer-related quality measures. In general, these disparities were primarily driven by racial differences in care for black and white patients within the same VA hospital, rather than racial differences in site of care.

The radiotherapy clinics in Sweden have been without a functioning national platform consisting of dose data from patients undergoing radiotherapy. A national collaboration between clinics will improve the quality of radiotherapy since clinics will be able to compare dose data from treatment plans between clinics. It will also help and improve future researches in radiotherapy. A new national quality registry for radiotherapy in Sweden is under development and is located on the INCA platform. The aim of this study is to do a quality assurance of the INCA registry. The data stored in the registry are calculated from the treatment plans stored locally at the clinics. The quality assurance of the registry is done by creating a program run by Python code and by using Streamlit as the graphical user interface. The program takes dose and volume data from the dose volume histograms located in treatment plans from the INCA database and compares it with the dose and volume data from the local clinics' treatment planning system. The different treatment planning systems considered in the program are Oncentra(Elekta, Sweden), Eclipse(Varian, U.S.), RayStation(RaySearch Laboratories, Sweden) and Monaco(Electa, Sweden). The compared absorbed doses are the dose to 99% of the structure volume(D99%), D98%, D50%, D2% and D1%. The program generates how much the INCA data differs from the TPS data in percent and is named QARS(Quality Assurance of the Radiotherapy Database in Sweden). A verification of the created program and a preliminary evaluation is done on a limited dataset containing three patient groups(prostate patients, lung patients and head and neck patients) with five patients in each group. The dataset is run through the program with patient data from both Oncentra and Eclipse. The result indicates that all the near-maximum doses, D2% and D1% in INCA are very close to their corresponding TPS dose. There is a more noticeable difference in the near-minimum doses, D99% and D98% but also for some D50% where the difference seems to increase in larger structure volumes with very low doses and in very small structure volumes, smaller than 0.01 cm3. It is compared how well INCA agrees with Oncentra and Eclipse respectively and it is clear that Eclipse has a smaller difference to INCA than Oncentra for structures with very small volumes and larger structures with low doses. To summarise the study, it generates a program for quality assurance of the national quality registry for radiotherapy in Sweden which hopefully can help improve the quality of radiotherapy and help future researches in the field.

Aim: To determine if a significant relationship exists between a) nurse-driven interventions to foster collaborative psychiatric and oncology care and b) higher rates of cancer treatment adherence and lower healthcare utilization rates in patients with serious mental illness (SMI) and cancer. Background: It is not uncommon for patients with SMI to suffer from treatment noncompliance and present in the acute care setting, such as the emergency department. Patients with cancer and SMI pose a unique challenge to nurses and providers due to the psychological effect of a cancer diagnosis as well as side effects experienced from psychotropic medications and oncology treatments alike. As a result, these patients are less likely to maintain cancer treatment regimens and present with advances stages of cancer in the acute care setting. Methods: An extensive electronic literature search in the CINAHL Plus and APA PsycINFO databases was completed and included the keywords: cancer, neoplasms, carcinoma, serious mental illness, chronic mental illness, mental disorders, mental disorders, chronic, psychiatric illness, psychiatric disability, cognitive behavioral therap*, intervention*, mindful*, and mental health. Inclusion criteria included: published in the years 2012-2022. The available literature was carefully examined for interventions performed with SMI and cancer for ultimate results to be finalized as a written report. Significance: The results of this research can optimize healthcare and prognosis for the population of mental health patients with cancer and also reduce costs to the healthcare system. Conclusion: The 10 studies reviewed indicated that collaborative psychiatric-oncology care with specific Registered Nurse (RN)-led interventions, such as medication management programs and behavioral counseling, was associated with increased rates of cancer treatment adherence and lower rates of healthcare utilization. Conclusions were based on data collected in cohort studies, randomized control trials, pre- and post-intervention assessments, and clinic data from quality improvement projects. More research is needed to explore the implementation of collaborative care practices.

Breast cancer remains a significant public health concern worldwide, with persisting disparities in several aspects of breast cancer care. Implicit bias has emerged as a potential contributor to these disparities. While previous research has examined implicit bias in healthcare, particularly in the context of racial and ethnic disparities, no review has been conducted to examine the association of physician implicit bias and breast cancer care. There remains a need for further investigation into its role in breast cancer care. This scoping review aims to systematically analyze the existing literature on physician implicit bias in breast cancer care to discern its potential influence on healthcare disparities. Through this analysis, we aim to identify key gaps and patterns in the literature, as well as to gain a comprehensive understanding of the role of physician implicit bias in breast cancer care. Our findings are intended to inform future research directions and contribute to the ongoing discussion on healthcare disparities and outcomes. The scoping review employed a systematic search strategy across three databases: APA PsycINFO, PubMed, and Web of Science. The search focused on articles examining implicit bias in breast cancer screening, diagnosis, and treatment/outcome disparities. Inclusion criteria encompassed studies published between 2013 and 2023, with data extracted and summarized using EndNote. Screening and methodological quality assessment were conducted by two undergraduate students, with discrepancies resolved through discussion and consultation with the thesis chair. Six articles were included in the scoping review, primarily focusing on treatment-related disparities. Self-administered methods, including the Implicit Association Test, were commonly used to assess implicit bias among healthcare providers. The studies highlighted demographic disparities among physicians and identified variables such as physician characteristics, patient experiences, and race/ethnicity as factors influencing implicit bias in breast cancer care. The scoping review identified a limited number of studies addressing implicit bias in breast cancer care, indicating a need for further investigation, particularly in the areas of screening and diagnosis disparities. The findings underscore the importance of considering both provider and patient perspectives in understanding and addressing healthcare disparities. Future research should explore demographic factors such as physician age and gender and continue to examine variables influencing implicit bias to inform interventions aimed at promoting equitable care for all breast cancer patients. It is important to acknowledge that although factors like mistrust may shape behaviors that could affect healthcare disparities, the few studies identified in this scoping review did not test whether a correlation exists between these factors and predictors of healthcare disparities. This highlights the necessity for further research to explore potential associations between physician implicit bias and healthcare disparities.

BACKGROUND: The field of health literacy research has been focused recently on developing more accurate measurement tools and understanding the relationship between health literacy and health outcomes. Individuals with lower levels of health literacy have worse health outcomes, including hospitalization rates, compared to those with adequate health literacy. This relationship has yet to be examined in the cancer patient population, although significant relationships between health literacy and cancer knowledge, screening behavior and quality of life have been found. This study is the first to examine the relationship between health literacy and hospitalization rates in a cancer patient population, and the first to examine the relationship between health literacy and health outcomes using the recently developed Cancer Health Literacy Tests (CHLT-30, CHLT-6). METHOD: These secondary data analyses matched data collected during the larger Cancer Health Literacy Study (CHLS) to hospital data from electronic medical records. This study examined the data of 778 CHLS participants interviewed within the first five years of their cancer diagnosis. The outcomes of interest were the number of inpatient hospital admissions, the total number of days spent hospitalized, and the number of 30-day hospital readmissions. Multivariate multiple negative binomial regression modeling was done to identify predictors of the three hospitalization outcomes. RESULTS: The CHLT-30 was found to significantly predict number of inpatient admissions when controlling for confounding variables, total days hospitalized, and number of readmissions. The CHLT-6 significantly predicted total days spent hospitalized when controlling for number of inpatient admissions, number of 30-day readmissions, treatment, race, stage, number of comorbidities, dying, and education level, with those with limited health literacy spending more days in the hospital as compared to those with adequate health literacy. CONCLUSION: This study produced mixed results regarding the significance of health literacy in predicting hospitalization rates in a cancer patient population. However, this study provides evidence that health literacy may be a mediator in this relationship and further work should be done to test a full or partial mediation model.

Background: It is a well-known phenomenon that nurses and other oncology staff have a tendency to ascribe patients with cancer more problems and suffering than the patients themselves report. Aim: The overall aim of the present thesis was therefore to gain increased knowledge and understanding of dis/agreement between patients with cancer and nurses regarding their perception of patients’ situation and of the importance of patient-nurse dis/agreement in clinical practice. Methods: A prospective comparative design was used. Data were collected from a sample of 90 consecutively recruited patient-nurse pairs. Each pair consisted of a patient with cancer, newly admitted to a ward, and a nurse responsible for that patient’s care. Data were collected from the pairs with corresponding self-administrated questionnaires on two occasions: directly after the admission interview and on the patient’s third day on the ward. Results: At the group level, a distinct pattern was shown in which nurses ascribed the patients more emotional distress, less coping resources and a lower quality of life than the patients themselves reported. In short, the results revealed the following clinical importance of patient-nurse dis/agreement. With respect to how nurses act in relation to their perceptions of patients’ emotional distress, patient-nurse dis/agreement did not seem to be important; with few exceptions, nurses’ implemented care did not differ when it was directed at more as compared to less distressed patients. Further, nurses’ general tendency to overestimate cancer patients’ problems and suffering had no influence on patients’ satisfaction with received care and nurses’ satisfaction with provided care. However, patients cared for by nurses who underestimated their level of depression were less satisfied with those nurses’ care. In addition, the more frequently the nurse had implemented care characterized by a trusting relationship, the higher patients’ and nurses’ satisfaction with received/provided care. Conclusions: Initial patient-nurse dis/agreement concerning patients’ situation appears to be of little significance to nurses’ caring behaviour and to patients’ and nurses’ subsequent evaluation of received and provided care.

The Patient-Centred Assessment of Symptoms and Activities (P-CASA) is a new idiographic, open-ended assessment that examines each individual patient’s symptoms within the context of his or her daily life. P-CASA asks patients for their most important activities, what interferes with these activities, and any coping strategies. This thesis presents the rationale and design of P-CASA and its first validation study. Sixty patients at the Pain and Symptom Management/Palliative Care Clinic of the BC Cancer Agency (Vancouver Island Centre) completed P-CASA and the Edmonton Symptom Assessment System (ESAS), which is the current nomothetic assessment at the Clinic. The results demonstrated that P-CASA was not redundant with ESAS because it assessed (a) information about patients’ activities and coping strategies, which the ESAS does not; (b) all relevant cancer-related symptoms (not just pain or a fixed list); (c) co-occurring symptoms; (d) more specific details and different priorities about symptoms than in their ESAS. / Graduate

Patient-centred care has become an important model for health-care delivery, especially in cancer care. The implementation of this model includes patient-centred communication between the clinician and his or her patient. However, most research on patient-centred communication focuses on the clinicians’ initiative: what clinicians should do and what information they should seek to elicit from patients. It is equally important to recognize what each individual patient can contribute about his or her unique perspective on the disease, its treatment, and the effects on what is important to this patient. This thesis reports the development of a system for analyzing over 1500 utterances made by patients in eight video-recorded oncology consultations at the British Columbia Cancer Agency, Vancouver Island Centre. The analysis distinguishes between biomedical information that the patient can provide and patient-centred information, which contributes the individual patient’s unique perspective on any aspect of his or her illness or treatment. The resulting analysis system includes detailed operational definitions with examples, a decision tree, and .eaf files in ELAN software for viewing and for recording decisions. Two psychometric tests demonstrated that the system is replicable: high inter-analyst reliability (90% agreement between independent analysts) on a random sample of the data set and cross-validation to the remainder of the data set. A supplemental idiographic analysis of each consultation illustrates the important role that patient-centred information played in these consultations. This system could be an important tool for teaching clinicians to recognize the individual information that patients can provide and its relevance to their care. / Graduate / 0992 / 0451 / 0350 / shealing@uvic.ca

Submitted by Luciana Ferreira (lucgeral@gmail.com) on 2018-07-18T11:17:54Z No. of bitstreams: 2 Tese - Luciana Alves de Oliveira - 2018.pdf: 1552159 bytes, checksum: 445d2c7e768d673821fe5ddce56e33eb (MD5) license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) / Approved for entry into archive by Luciana Ferreira (lucgeral@gmail.com) on 2018-07-18T11:48:18Z (GMT) No. of bitstreams: 2 Tese - Luciana Alves de Oliveira - 2018.pdf: 1552159 bytes, checksum: 445d2c7e768d673821fe5ddce56e33eb (MD5) license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) / Made available in DSpace on 2018-07-18T11:48:18Z (GMT). No. of bitstreams: 2 Tese - Luciana Alves de Oliveira - 2018.pdf: 1552159 bytes, checksum: 445d2c7e768d673821fe5ddce56e33eb (MD5) license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) Previous issue date: 2018-07-06 / The vulnerability on researches involving human being includes the reduction or impairment of individual’s self-determination ability. Several circumstances may determine the vulnerability situation. International regulations and consensus around ethics research are not enough to ensure respect for research participants and to prevent any harms arising from research. Research in hospitals has peculiarities about the health-disease process. This research sough to identify the research patient-participant situations of vulnerability occurring concomitantly with their treatment in a hospital in Goiânia-GO; and to analyze the meanings of vulnerability attributed by the actors involved in the context of research development in a hospital in Goiânia-GO. This was a qualitative approach of an ethnomethodology research based on Foucault's theoretical framework. Semi-structured interviews were conducted with 15 patients and 15 health professionals at a public hospital in Goiânia-GO. Three categories emerged from the interviews: "Changed lives", "Professional training" and "The ideal place". The results evidenced the tendency of the participants to understand the research as something positive that will bring important contributions for treatment, allowing the hope of the cure. The participants recognized the hospital as the ideal place to seek healing. However there were situations of weaknesses, such as the health care system itself and the communication between health professionals and patients. This suggests that the power existing in these relations still reiterates the maintenance of hierarchy and fragilities, affecting the exercise of autonomy by the patient. Thus, the speeches expressed and showed how power is established in that place, as well as the communication itself. Even not all participants perceived the weaknesses present in the research field, which amplifies the dimensions of the vulnerabilities. It is possible to conclude that the senses of vulnerability in this context cover the changes in the lives of those patients-participants, the process of training of the professionals and, also, the experience of the routines in that hospital considered reference for the treatment. / A vulnerabilidade em pesquisas envolvendo humanos compreende a redução ou impedimento da capacidade de autodeterminação do indivíduo. Vários fatores podem influenciar o estado e/ou a condição de vulnerabilidade. Regulamentações e consensosinternacionais sobre ética em pesquisa vigentes não são suficientes para garantir o respeito aos participantes de pesquisa e nem impedir malefícios decorrentes de pesquisas. Pesquisas em hospitais apresentam peculiaridades inerentes ao processo saúde-doença. Objetivos: identificar as situações de vulnerabilidade do paciente/participante de pesquisa presentes na realização de pesquisas concomitantemente ao tratamento em um hospital de Goiânia-GO; e analisar os sentidos de vulnerabilidade atribuídos pelos atores envolvidos no contexto do desenvolvimento de pesquisas em um hospital de Goiânia-GO. Estudo de abordagem qualitativa do tipo etnometodologia adotando o significado como conceito central da investigação. Algumas análises foram fundamentadas no pensamento de Foucault. Foram realizadas entrevistas semiestruturadas com 15 pacientes e 15 profissionais de saúde de um hospital da rede pública de saúde de Goiânia-GO. Três categorias emergiram das entrevistas realizadas: “Vidas alteradas”, “Formação profissional” e “O local ideal”. Os resultados evidenciaram a tendência dos participantes em vislumbrar a pesquisa como algo positivo que trará importantes contribuições no tratamento, permitindo esperança da cura. Os participantes reconheceram o hospital como o local ideal para buscar a cura. Todavia, nele estavam presentes situações de fragilidades, como o próprio sistema de atendimento à saúde e a comunicação entre profissionais de saúde e pacientes. Isto sugere que o poder existente nessas relações ainda reitera a manutenção da hierarquia e fragilidades, afetando o exercício da autonomia pelo paciente. Assim, os discursos expressaram e evidenciaram como o poder se estabelece naquele local, bem como a própria comunicação. Nem todos os participantes percebem as fragilidades que entrelaçam o cenário da pesquisa, o que amplia as dimensões das vulnerabilidades presentes. Concluímos que os sentidos de vulnerabilidade nesse contexto abrangem as modificações nas vidas daqueles pacientes, o processo de formação dos profissionais e, ainda, a vivência das rotinas naquele hospital considerado referência para o tratamento.