Thesis advisor: Jane Flanagan / BACKGROUND: Breast cancer survivors experience a range of needs in the post-treatment phase as they transition into survivorship and beyond. The transition to survivorship requires breast cancer survivors to actively engage in self-managing their care, but little is known about patient engagement into survivorship care and what factors may contribute to this. Information is needed to further explore patient engagement into survivorship care, what factors may contribute to it and which patients are more likely to engage in their care and thus be better equipped to self-manage during survivorship. PURPOSE: The purpose of this study was to explore how demographic/personal factors and survivorship outcomes are related to and may contribute to patient engagement in early stage breast cancer survivors. METHODS: A cross-sectional, web-based self-report national survey was conducted using measures assessing personal/demographic factors, survivorship outcomes: health-related quality of life (HRQOL), fear of cancer recurrence (FCR), cancer health literacy (CHL) and two measures of patient engagement (patient activation (PA) and knowing participation in change (KPC). There was one open-ended question regarding additional survivorship concerns, not addressed in the previous survey items. Participants were recruited using Dr. Susan Love’s Army of Women Research Foundation and Craigslist. Data were analyzed via bivariate associations and backwards linear regression modeling in SPSS. RESULTS: The final sample included 303 participants (301 females and 2 males) with a mean age of 50.70 years. The sample was predominantly White, non-Hispanic and equally dispersed across the United States. Patient engagement, as represented by PA and KPC, was significantly correlated with 13 predictor variables and there were 10 predictor variables that resulted in significant ANOVA relationships with PA and KPC. In both the KPC and PA regression models, HRQOL significantly predicted for patient engagement. In the KPC regression model, social support and level of education also significantly predicted for patient engagement and receipt of a survivorship care plan contributed unique variance to the model. The open-ended question response categories included: physical concerns, mental health concerns, financial toxicity, social support, body image concerns, other concerns or no concerns/none. CONCLUSIONS: This study provides preliminary evidence that personal/demographic factors and survivorship outcomes may contribute to patient engagement in breast cancer survivors. Using assessment tools that measure factors such as HRQOL, social support, education level and patient engagement may give providers some insight as to which survivors may be ready to engage in survivorship care and those that may need more resources and/or support. Additional studies are needed to replicate and validate these results. More research is needed aimed at maximizing patient-centered care, patient engagement and ultimately improving SC. Keywords: breast cancer survivor, survivorship, patient engagement, health-related quality of life, social support. / Thesis (PhD) — Boston College, 2019. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

A hipertensão arterial pulmonar é caracterizada pela elevação anormal dos níveis pressóricos do território arterial pulmonar com conseqüente falência da função ventricular direita. A doença é altamente incapacitante, conforme demonstrado pela limitação nos testes de avaliação funcional, como o teste de caminhada de seis minutos. Entretanto, o impacto da doença na qualidade de vida dos pacientes não é totalmente conhecido. O objetivo desse estudo foi avaliar a qualidade de vida de pacientes com HAP através do questionário genérico SF-36, correlacionando os achados com os demais marcadores de gravidade da doença, assim como com a sobrevida. Os resultados mostraram que a QV apresenta forte correlação com TC6M e Classe Funcional e tem melhora significativa após tratamento específico. O Componente Físico do SF-36 teve significante associação com a sobrevida, permitindo concluir que a avaliação de qualidade de vida deve fazer parte da avaliação rotineira de pacientes com HAP / Pulmonary arterial hypertension (PAH) is a rare but insidious disease characterized by progressive pulmonary vascular remodelling with increased pulmonary vascular resistance ultimately leading to right ventricular failure e progressive dyspnea, leading to profound functional limitations, how is demonstrated by the six minute walk test. However, there is limited information about quality of life (QoL) in patients with PAH. The aim of this study was to evaluate the quality of life of PAH patients with the SF-36 generic questionnaire and compare the scores with the surrogate markers and identify the prognostic implication of this assessment. The results showed there was a good correlation with six minute walk test and functional class and there was a significant improvement in QoL after specific treatment. The physical component summary (PCS) of the SF36 QoLQ was significantly related to survival. Conclusion is that QoL is a useful tool for routine evaluation of PAH patients once it correlates with other surrogate markers, reflects treatment effect and predicts survival

INTRODUÇÃO: Delirium é um problema médico frequente em idosos e está potencialmente associado a desfechos desfavoráveis, como prolongamento da hospitalização, declínio funcional e cognitivo, e maior mortalidade. Contudo, considerando que, geralmente, ocorre em situações de grande complexidade clínica, o efeito ajustado de delirium e seus subtipos motores sobre o prognóstico de pacientes acometidos ainda não foi suficientemente explorado. OBJETIVOS: Investigar em idosos agudamente enfermos hospitalizados: (1) a associação independente entre ocorrência de delirium e tempo para óbito intra-hospitalar, e em 12 meses de seguimento; (2) a associação independente entre subtipos motores de delirium e tempo para óbito intra-hospitalar, e em 12 meses de seguimento. MÉTODOS: Estudo de coorte prospectivo realizado em uma enfermaria de geriatria de um hospital universitário terciário, em São Paulo, Brasil. Foram incluídas internações de pacientes agudamente enfermos, com idade igual ou superior a 60 anos, hospitalizados entre junho de 2009 e maio de 2014. Delirium foi detectado pelo Confusion Assessment Method e classificado de acordo com o subtipo motor em hipoativo, hiperativo, ou misto. Os desfechos primários foram tempo para óbito intra-hospitalar, e tempo para óbito em 12 meses (para a amostra que recebeu alta). Os pacientes foram avaliados na admissão seguindo modelo de avaliação geriátrica ampla que incluiu variáveis sociodemográficas, clínicas, funcionais, cognitivas, e laboratoriais. Informações adicionais sobre a hospitalização foram registradas na alta ou no óbito. As análises multivariadas foram realizadas por meio de modelos de riscos proporcionais de Cox. Foi examinada a presença de modificação do efeito de delirium sobre os desfechos por análises de interação com outros fatores clínicos. RESULTADOS: Incluímos 1.034 hospitalizações, com uma média de idade de 80 anos. Na amostra geral, 61% eram mulheres, e 35% tinham demência. A mortalidade intra-hospitalar foi de 22%, com uma mortalidade cumulativa de 44% em 12 meses. Delirium ocorreu em 52% das internações, e o subtipo motor predominante foi o hipoativo (53%). Nas hospitalizações com delirium, 32% dos idosos faleceram no hospital, com uma taxa de óbitos cumulativa de 59% em 12 meses. Verificamos que delirium teve associação independente com tempo até óbito intra-hospitalar (HR=1,63 IC95%=1,11-2,40), porém não encontramos associação estatisticamente significante com sobrevida em 12 meses após ajuste para as covariáveis selecionadas. Constatamos, ainda, que os subtipos hipoativo e misto se associaram independentemente com o desfecho intra-hospitalar (HR=1,87 IC95%=1,24-2,83; HR=1,65 IC95%=1,022,67), mas não houve associação estatisticamente significante com o desfecho em 12 meses. O efeito de delirium sobre o tempo até óbito intrahospitalar não foi modificado de modo significativo por sua interação com idade, câncer, desnutrição, ou valores de albumina sérica. CONCLUSÕES: Um terço dos idosos agudamente enfermos internados que tiveram delirium faleceu ainda no hospital. Delirium se associou a menor tempo de sobrevida intra-hospitalar, mesmo após ajuste para características clínicas coexistentes. Além disso, profissionais da saúde devem ter especial atenção com os subtipos hipoativo e misto de delirium, que também se associaram independentemente com maior mortalidade intra-hospitalar em idosos / BACKGROUND: Delirium in older adults is common and potentially associated with unfavorable outcomes, such as longer hospital stay, functional and cognitive decline, and higher mortality. However, given that it usually occurs in a context of great clinical complexity, the adjusted effect of delirium and its motor subtypes on the prognosis of affected patients has not been sufficiently explored. OBJECTIVES: To investigate in acutely ill hospitalized older adults: (1) the independent association between delirium and time to death in the hospital, and in a 12-month follow-up; (2) the independent association between delirium motor subtype and time to death in the hospital, and in a 12-month follow-up. METHODS: Prospective cohort study completed in a geriatric ward of a tertiary university hospital, in Sao Paulo, Brazil. We included admissions of acutely ill patients aged 60 years and over, who were hospitalized from June 2009 to May 2014. Delirium was detected using the Confusion Assessment Method and classified according to its motor subtype in hypoactive, hyperactive, or mixed. Primary outcomes were time to death in the hospital, and time to death in 12 months (for the discharged sample). Patients were evaluated at admission according to a comprehensive geriatric assessment model that included socio-demographic, clinical, functional, cognitive, and laboratory variables. Further clinical data were documented upon death or discharge. Multivariate analyses were performed using Cox proportional hazards models. We investigated the potential modification of the effect of delirium on outcomes including an interaction term between delirium and other clinical variables. RESULTS: We included 1,034 hospitalizations, with a mean age of 80 years. Overall, 61% were women, and 35% had dementia. The proportion of in-hospital deaths was of 22%, with a cumulative mortality of 44% in 12 months. Delirium ensued in 52% of the admissions, and the predominant motor subtype was hypoactive (53%). In-hospital death occurred in 32% of the cases with delirium, while cumulative 12-month mortality reached 59% in this group. We verified that delirium was independently associated with time to in-hospital death (HR=1.63 95%CI=1.11-2.40), but did not find statistically significant association with 12month survival after adjusting for selected covariates. We additionally found that hypoactive and mixed motor subtypes were independently associated with in-hospital death (HR=1.87 95%CI=1.24-2.83; HR=1.65 95%CI=1.02-2.67), but there were no significant associations with 12-month mortality. The effect of delirium on time to in-hospital death was not significantly modified by its interaction with age, cancer, malnutrition, or serum albumin levels. CONCLUSIONS: One third of acutely ill hospitalized older adults who suffered delirium died in the hospital. Delirium was associated with decreased survival in the hospital, even after adjusting for coexistent clinical characteristics. In addition, health care providers should be attentive for the hypoactive and mixed subtypes of delirium, as they were also independently associated with poorer in-hospital outcomes in older adults

The National Comprehensive Cancer Network identified occupational therapy as a first line of intervention for the treatment of cancer-related cognitive dysfunction (CRCD) (National Comprehensive Cancer Network [NCCN], 2016). Thus, occupational therapists have an opportunity to develop interventions that facilitate participation in meaningful occupations for survivors of cancer living with CRCD. In this article, we argue for occupational therapists to create occupation- and evidence-based, client-centered interventions for survivors of cancer with CRCD that address the multidimensional presentation of CRCD. One survivor’s story illustrates the affect of CRCD on occupational performance and the features to consider when developing interventions to meet the unique needs of survivors of cancer with CRCD. We recommend that interventions can be provided through self-paced home programming, community settings, or delivered through modes such as tele-rehabilitation to reach the growing population of survivors of cancer.

A hipertensão arterial pulmonar é caracterizada pela elevação anormal dos níveis pressóricos do território arterial pulmonar com conseqüente falência da função ventricular direita. A doença é altamente incapacitante, conforme demonstrado pela limitação nos testes de avaliação funcional, como o teste de caminhada de seis minutos. Entretanto, o impacto da doença na qualidade de vida dos pacientes não é totalmente conhecido. O objetivo desse estudo foi avaliar a qualidade de vida de pacientes com HAP através do questionário genérico SF-36, correlacionando os achados com os demais marcadores de gravidade da doença, assim como com a sobrevida. Os resultados mostraram que a QV apresenta forte correlação com TC6M e Classe Funcional e tem melhora significativa após tratamento específico. O Componente Físico do SF-36 teve significante associação com a sobrevida, permitindo concluir que a avaliação de qualidade de vida deve fazer parte da avaliação rotineira de pacientes com HAP / Pulmonary arterial hypertension (PAH) is a rare but insidious disease characterized by progressive pulmonary vascular remodelling with increased pulmonary vascular resistance ultimately leading to right ventricular failure e progressive dyspnea, leading to profound functional limitations, how is demonstrated by the six minute walk test. However, there is limited information about quality of life (QoL) in patients with PAH. The aim of this study was to evaluate the quality of life of PAH patients with the SF-36 generic questionnaire and compare the scores with the surrogate markers and identify the prognostic implication of this assessment. The results showed there was a good correlation with six minute walk test and functional class and there was a significant improvement in QoL after specific treatment. The physical component summary (PCS) of the SF36 QoLQ was significantly related to survival. Conclusion is that QoL is a useful tool for routine evaluation of PAH patients once it correlates with other surrogate markers, reflects treatment effect and predicts survival

INTRODUÇÃO: Os linfomas B atualmente podem ser agrupados de acordo semelhanças moleculares e imunoistoquímicas com o linfócito do centro germinativo (CG) ou linfócito ativado (LA/pós CG), sendo este de pior prognóstico. O objetivo deste trabalho foi analisar a expressão de CD10, BCL-6 e MUM1 em pacientes portadores de LBPM e correlacionar com prognóstico. MÉTODOS: análise retrospectiva das variáveis clínicas e de tratamento de 44 pacientes portadores de LBPM. Estudo imunoistoquímico de CD10, BCL-6 e MUM1 em 29 pacientes com material disponível. RESULTADOS: idade mediana foi de 28 anos e 70% eram do sexo feminino. A positividade para CD10, BCL-6 e MUM1 foi de: 24%, 65% e 58%. De acordo com o modelo de Hans, 38% foi classificado como CG e 62% como pós CG. A sobrevida global em 5 anos e sobrevida livre de doença foi de 47% e 81%, respectivamente. Resposta Completa após quimioterapia de primeira linha (p=0,0001), radioterapia de mediastino (p=0,004) e IPI (0,039) tiveram associação com a sobrevida. A positividade para MUM1 esteve associado a pior sobrevida global (p=0,014). Aplicando o modelo de Hans não foi observada nenhuma associação com sobrevida. Na análise multivariada apenas Resposta (RR 4,28 (IC 95% 1,3-13,6) e MUM1 (RR 3,54 (1,1-11,5) correlacionaram com a sobrevida. CONCLUSÃO: Para este grupo de pacientes com características clínicas homogêneas, resposta completa e expressão de MUM1 estiveram associados à sobrevida. A classificação deste linfoma em CG e pós-CG utilizando CD10, BCL-6 e MUM1 não se correlacionou com evolução. Estudos futuros com casuística maior são necessários para melhor definir os fatores prognósticos do LBPM / INTRODUCTION: Primary Mediastinal Large B Cell Lymphoma (PMLBCL) is a distinct clinico-pathologic entity that differs from other Diffuse Large B Cell Lymphomas (DLBCL). Classification of DLBCL in GC and post-GC according can identify two subgroups of lymphomas with distinct prognosis. The aim of this study is to analyze the expression of CD10, BCL-6 and MUM1 in PMLBCL and correlate with prognosis. METHODS: retrospective analysis of clinical variables of 44 patients with PMLBCL and expression of CD10, BCL- 6 and MUM1 in 29 patients with available tissue. RESULTS: median age was 28 years and 70% of the patients were female. CD10, BCL-6 and MUM1 was positive in 24%, 65% and 58%, respectively. According to Hans classification, 38% were classified as GC and 62% as post-GC. Five year OS and DFS was 47% and 81%, respectively. In univariate analysis Complete Response (p=0.0001), Radiation therapy (p=0.004), IPI (0.039), and MUM1 expression (0.014) correlated with OS. No correlation was seen with Hans classification and survival. CONCLUSION: for this group of patients with homogeneous clinical features, response to therapy and MUM1 expression were associated with prognosis. The Hans algorithm proposed for aggressive lymphomas was not a predictive tool for survival in PMLBCL. Further studies are necessary to validate our finding and identify better prognostic variable for PMLBCL

Social support plays a crucial role in both the physical and mental adjustment to the diagnosis of breast cancer and its treatment. However, the mediating effects of social support are embedded within the larger, social and cultural contexts in which support given and received. Due to language, culture and economic issues, immigrants may find themselves without the social support and networks that had previously enabled them to cope with illness and disease. This research grounds our understanding of social support and breast cancer within that larger context that includes the social environment and the experience of health disparities. Ethnographic methods were used to explore the cultural domains of social support and to examine cultural and structural factors that influence this multifaceted construct. Participant observation, key informant interviews and 28 in-depth interviews with Latina immigrants diagnosed with breast cancer were conducted in Phase I. The qualitative data gathered in Phase 1 informed the development of the structured questionnaire that was administered in Phase II to 60 Latina immigrants in West Central Florida who had been diagnosed with breast cancer. Breast cancer not only affects individuals, it impacts their social relationships, finances, work, and social roles. The analysis provides a rich and in-depth understanding of social support and contextualizes the breast cancer experience of Latina immigrants. Results suggest that cultural expectations about gender roles shape what kinds of support and assistance is provided by men and women. Spirituality and prayer were identified as non verbal sources of support. Beliefs about not burdening the family with personal concerns and beliefs that family needs should come before one's own were negatively associated with social support. English proficiency and length of time in the United States were not associated with social support. Regardless of length of time in the US there appears to be strong ties with family in their native country. While family both in the US and in their native country were identified as sources of support, they were also identified as a source of stress. Recommendations for clinicians, practitioners and community-based organizations that provide supportive services and programs to Latinos are included.

When examining the process of the intergenerational transmission of trauma for the experiences of first, second, and third generation Holocaust survivors, there exists both overlapping similarities and unique differences. Understanding the trends that underlie this process is of crucial importance when researching the cultural changes in communication and openness across generations that have occurred over time. In particular, minimal prior research has been conducted regarding the unique perspectives of third generation survivors. It is important to highlight that the third generation offers a unique perspective as the youngest participants of studies on post-Holocaust trauma, given that minimal prior research has been conducted on this young demographic. This study aims to fill in sizable gaps in the literature, comprehensively analyzing similarities and differences through the narrative-telling of three living generations of Holocaust survivors. Based on an extensive review of literature, this study poses interview questions adequately suiting each of the three generations and their respective experiences. Based on the results of the power analysis, a minimum of 966 Holocaust survivors from all three generations need to be studied in order to achieve a powerful effect size. For the purpose of this study, data is analyzed using thematic analysis, a coding method that converts qualitative data into quantitative data and identifies patterns of meaning across a dataset (Padgett, 2008). The research findings yielded from this study further the inquiry in literature on Holocaust survivorship, as well as introducing research questions of the intergenerational transmission of trauma.

Pathogenic fungi are increasingly associated with epidemics in wildlife populations and represent a significant threat to global biodiversity. Snake fungal disease is an emerging disease caused by the fungus, Ophidiomyces ophiodiicola, and appears to be widespread in the eastern United States. Yet an evaluation of field diagnostics, and an understanding of the population-level consequences of the disease, are lacking. First, I evaluated the use of clinical signs to predict the presence of O. ophiodiicola across season and snake habitat affiliation (aquatic or terrestrial) and I compared two sampling methods to see if collection method impacts PCR result. Overall, snakes with clinical signs had a higher probability of testing positive regardless of season or habitat association. However, terrestrial snakes had a lower overall probability of testing positive for O. ophiodiicola compared to aquatic snakes. I found no significant difference between sampling methods. Second, I used Passive Integrated Transponder (PIT) telemetry, and multistate capture-mark-recapture modelling to determine if SFD affects the short-term survival, movement, and behavior of wild snakes. I found no difference in short-term survival for snakes with SFD. Snakes with SFD spend more time surface-active and have lower permanent emigration and temporary immigration rates than snakes without SFD.

This research project aims to examine the idea of stigma attached to cervical cancer in light of its association with HPV, a sexually transmitted infection (STI). The public recognition of this relationship appears to be increasing due to the current media attention surrounding HPV's causative role in the development of cervical cancer, and the newly-released HPV vaccine. Thus, this study explores the experiences and perceptions of cervical cancer patients and survivors living with this disease at a moment in time when it is becoming a very visible manifestation of a sexually transmitted infection, versus one identified historically as a life-threatening cancer. Disease-related stigma has vast individual, community, and societal repercussions: in the context of both cancer and sexually transmitted infections, it is broadly associated in the literature with decreased levels of screening, reluctance to seek treatment, decreased access to social support, economic discrimination, and major difficulties in implementing large-scale prevention efforts, such as contact tracing or name-based reporting. This study is premised on the belief that including the voices of patients and survivors themselves will provide a more holistic and complete understanding of the dimensions of cervical cancer-related stigma, which in turn will help to inform future educational and prevention messages tailored to reduce its impact. Additionally, it will illuminate the complexities and dynamics of how patients/survivors are able or unable to access social support-a first step in designing more effective and relevant support programs.