Advances in cancer treatment coupled with a rapid aging of the population have contributed to an unprecedented growth in the number of older adult cancer survivors. While this growth reflects remarkable scientific achievements, cancer and its treatment can precipitate a range of physical and psychological health complications, which can be amplified in old age. Preserving the health-related quality of life of older cancer survivors is one of the most important concerns in cancer survivorship care. However, few studies have examined predictors of health-related quality of life in older adults with cancer, and even fewer have included racial and ethnic minority groups in their studies. The following collection of papers address these issues by using three population-based datasets to identify predictors and outcomes of health-related quality of life in older adults diagnosed with cancer. Data for the first paper is derived from the Behavioral Risk Factor Surveillance System and indicates that older adult cancer survivors have significantly better health-related quality of life than their middle-aged counterparts. However, older adults who are from racial or ethnic minority groups, those who face financial barriers to health care, are unmarried, or have greater co-morbidities are at risk of having poor health- related quality of life. In the second paper, which analyzed data from the merged Surveillance, Epidemiology, and End Results – Medicare Health Outcomes Survey dataset, older Asian American and Pacific Islander cancer survivors are found to have significantly worse mental health-related quality of life than older Non-Hispanic White cancer survivors. Across both groups, income and physical functioning are important predictors of health-related quality of life. Older Asian American and Pacific Islander cancer survivors who are less acculturated are at greater risk of having poor health-related quality of life. The third paper, which analyzed data from the National Health and Aging Trends Study, identifies social engagement as a significant predictor of subjective well-being. It also indicates that older adult cancer survivors who are not married and those experiencing symptoms of anxiety and depression are more likely to report poor subjective well-being. Collectively, these three papers demonstrate the need for strategies to improve the health-related quality of life of older racial and ethnic minority cancer survivors, and highlights the important contribution of social connections to health-related quality of life.

Lifestyle behaviors, including diet and exercise, may mediate the risk of breast cancer recurrence. Large national and international organizations, including the American Cancer Society, the American Institute for Cancer Research, and the World Research Fund, recommend consuming a diet high in plant-based foods, specifically fruits, vegetables, and whole grains, and low in dietary fat and added sugar for cancer recurrence prevention. In addition, these organizations recommend regular physical activity, typically 30 minutes of moderate to vigorous activity per day. However, many cancer survivors unfortunately fall short of meeting these recommendations. In addition, low-income, and racial/ ethnic minority populations, especially Latinas, are at increased risk of breast cancer recurrence due to a myriad of factors such as limited access to health care. Theory-based, behaviorally-focused, and culturally-tailored nutrition and physical activity education has been shown repeatedly to improve these lifestyle behaviors in other populations. Previous intervention studies by our research group have significantly improved dietary behaviors among Hispanic/ Latina breast cancer survivors. This dissertation consists of a review of the educational literature on diet and physical activity studies among breast cancer survivors, and three studies: (1) a methodological description on the development of a theory-based, behaviorally focused intervention with classroom and online education curricula, (2) an empirical validation study of a survey instrument, and (3) a cross sectional study of women’s diet and physical activity behaviors and theory-based determinants. Taken together, these studies can inform future educational interventions with this population by using our culturally-tailored, theory-based, behaviorally-focused model as a framework and by using our validated assessment tools. These studies can also inform future educational interventions by understanding diet and physical activity behaviors and related potential mediators. These dissertation activities were conducted within the context of a larger, on-going, two-by-two factorial designed National Cancer Institute (NCI) funded educational intervention study, Mi Vida Saludable (My Healthy Life), which aims to change diet and physical activity behaviors of Hispanic/ Latina breast cancer survivors. The main study will examine the separate and synergistic effects of a) online education and b) in-class education. The intervention is based upon nutrition education curricula developed by the non-profit organization Cook for Your Life, which develops recipes and cooking education for cancer patients and survivors in New York City and a previous intervention conducted by this research group, that targeted fruit, vegetable, and dietary fat intake only. The on-going larger study, Mi Vida Saludable, involves cohorts of 30-40 Hispanic/ Latina breast cancer survivors who go through the intervention arms, at intervals of every 4-8 months, depending on recruitment. As of April 2018, two of the five planned cohorts have completed the study, and four of the five cohorts have been randomized. The purpose of the initial comprehensive review of the literature was to inform the development of this Mi Vida Saludable educational intervention. Three areas relevant to the intervention were reviewed. The first area was the varying dietary and physical activity guidelines, both for cancer survivors, and also for common simultaneously occurring lifestyle-related diseases such as heart disease and diabetes. Similarities and differences were examined, and the resulting recommendations were used in the intervention development. The second area of review consisted of dietary and physical activity interventions that specifically targeted breast cancer survivors. Commonalities of successful interventions included the use of Social Cognitive Theory and the Stages of Change construct of the Transtheoretical Model. Finally, the text message literature was reviewed as it pertains to weight management, dietary, and physical activity behaviors, specifically among Hispanic/ Latina populations. Findings indicated that text message interventions were more successful if they decreased in frequency over time, included specific educational advice, and had the ability for two-way communication. The findings from these literature reviews were used to develop the Mi Vida Saludable intervention. (1). The methodological study involved the development of the content of the Mi Vida Saludable group education and electronic (“e-“)-communication programs. These programs were developed using a systematic stepwise theory-based, behaviorally-focused process, the Nutrition Education DESIGN Procedure. Briefly, DESIGN stands for: 1. Decide behaviors; 2. Explore determinants or potential mediators of change; 3. Select theory; 4. Indicate objectives; 5. Generate plans; and 6. Nail down evaluation. DESIGN was applied to help assure the curricula a) enhance motivation and b) facilitate action to change the following behaviors: 1) increase fruit and vegetable intake, specifically focused on non-starchy varieties, 2) decrease dietary fat intake operationalized as less fatty meats, decreased fat added during cooking, and smaller portions of cheese, 3) decrease added sugar intake operationalized as fewer sugar sweetened beverages and less added sugar in processed food and cooking, and 4) increase daily moderate-to-vigorous physical activity. The behavior-change theory applied was the Social Cognitive Theory. The resulting group education program consisted of 4 lessons, 4 hours each in length. Each lesson included a hands-on cooking component and facilitator-led nutrition education and discussion. Two of the four lessons included field trips to the local grocery store and farmers’ market. The resulting e-communication program included 11-months of weekly text messages, biweekly emailed newsletters, and ongoing website access. The content of the online curriculum was developed after the classroom curriculum and mirrored the classroom curriculum so that mode of education would be the key variable tested. (2). A survey instrument was developed to assess two key psychosocial potential mediators of behavior change from Social Cognitive Theory, preferences and self-efficacy, separately for each targeted behavior. This survey was tested for validity and reliability. Expert panel review assessed scale validity by Content and Face Validity. Participants from the target population assessed scale validity and reliability by 1) cognitive interviewing, 2) convergent validity, 3) internal consistency reliability, and 4) test-retest reliability. Content and face validity, and cognitive interviews successfully improved the questionnaire before quantitative analysis. Modifications from content and face validity included the addition of pictures of fruits and vegetables and the addition of examples of different food types high in fat and added sugar. Results from the cognitive interviews indicated primarily that changes should be made in the questionnaire to examples of foods with and without dietary fat and added sugar. Study findings revealed that Cronbach alpha values were sufficient for all Preferences and Self-efficacy scales except for Preferences for Added Sugar Intake. Study findings also revealed that item-total correlations were sufficient for all reduced Preferences and Self-efficacy scales, and that ICC values were sufficient for all Preferences and Self-efficacy reduced scales except for Preferences for Dietary Fat Intake. (3). Psychosocial potential mediators and measures of quality of life were examined in a cross sectional study of Mi Vida Saludable participants as they relate to women’s diet and physical activity behaviors at study entry. Outcome variables included diet, specifically servings of fruits and vegetables (both total and varieties specifically targeted by the intervention), percent dietary fat and added sugar, as well and average minutes of physical activity per week. Our study found that, among Hispanic/ Latina breast cancer survivors, decreased self-efficacy to choose lower sugar foods, increased locus of control of powerful others, and increased stress are related to increased added sugar intake. We also found that increased preferences for foods low in fat are related to decreased fat intake. Finally, we found higher mental health-related quality of life scores are related to increased fruit and vegetable intake, decreased fat intake, and increased physical activity. The results from these three studies will be used to understand behavioral outcomes of the Mi Vida Saludable study, as well as develop future interventions with this and other populations. Advancing our understanding of potential mediators and psychological variables can improve the development and success of interventions, especially among understudied populations such as Hispanic/ Latina breast cancer survivors.

O objetivo deste estudo foi avaliar a frequência e o grau de fadiga e depressão nos pacientes oncológicos submetidos a tratamento quimioterápico, no início, no meio e no final do tratamento e determinar a influência destes sintomas na qualidade de vida destes pacientes. Trata-se de um estudo descritivo prospectivo, com abordagem quantitativa e foram utilizados os instrumentos para levantar os dados sócio-demográficos e clínicos, Escala de Fadiga de Piper- revisada, Inventário de depressão de Beck e o Instrumento da Organização Européia de Pesquisa e Tratamento do Câncer - EORTC QLQ C30, para avaliar respectivamente a fadiga, depressão e qualidade de vida relacionada a sáude nos três momentos. Verificou-se que os instrumentos foram confiáveis para a amostra estudada. Amostra inicial foi constituída de 40 pacientes, sendo que 34 pacientes foram avaliados nos três momentos. Quanto as características sócio-demográficas e clínicas, verificou-se homogenia em relação ao sexo; houve um predominio de pacientes acima de 40 anos, casados, nível de escolaridade fundamental, religião católica e em relação ao diagnóstico, houve um predomínio de cancer gastrointestinal nos homens e cancer de mama nas mulheres. Os resultados demonstraram aumento da frequencia de fadiga e depressão nos três momentos. A depressão aumentou em torno de 10,15% dos pacientes do primeiro até o terceiro momento e a fadiga houve um aumento de 59,7% dos pacientes do primeiro até o terceiro momento. O conjunto dos resultados permitiu visualizar aumento da frequência de fadiga e depressão nos pacientes oncológicos submetidos a tratamento quimioterápico nos três momentos e uma influencia negativa de ambos na qualidade de vida destes pacientes. / The aim of this study was to assess the frequency and degree of fatigue and depression in cancer patients who underwent chemotherapy. The assessment was conducted at the beginning, middle and end of treatment to determine the influence of symptoms on quality of life of these patients. This is a descriptive and prospective study with a quantitative approach. Data was collected using socio-demographic and clinical data, revised Piper Fatigue Scale, Beck Depression Inventory and the European Organization Research and Treatment of Cancer Quality of Life Questionnaire C30 - EORTC QLQ C30, respectively used to assess fatigue, depression and quality of life related to health at the three mentioned moments. The instruments were reliable for the studied sample. The study started with 40 patients, 36 of them were assessed at the three moments. Regarding socio-demographic and clinical data, gender was homogenous, most were 40-years-old or older, were married, studied an average of 8 schooling years and were catholic. Most men were diagnosed with gastrointestinal cancer and most women were diagnosed with breast cancer. Results showed increased fatigue and depression frequency at the three moments. At the third moment, depression had increased in 10.15% patients and fatigue had increased in 59.7% of patients. The pooled results allowed visualizing the increase in frequency of fatigue and depression in cancer patients who underwent chemotherapy at the three assessed moments, and a negative influence of both on the quality of life of these patients.

The transition after hospitalization is a vulnerable period when adverse events like unplanned readmissions may occur. Unplanned readmissions with patients undergoing chemotherapy that are the result of gaps in communicating the discharge plan may be preventable. Several transitional care interventions have been explored, and one of these is the nurse discharge phone call. This project explored the effect of a nurse-led transitional discharge phone call within 30-days after hospital discharge on unplanned readmission due to chemotherapy among patients in the medical-oncology compared to patients without a nurse-led transitional discharge phone call. A nurse-led transitional discharge phone call was implemented within 48 to 72 hours after discharge from the medical-oncology unit of a hospital in the northeastern region of United States to determine its effectiveness in reducing the number of unplanned readmissions due to chemotherapy. The Donabedian model, the Iowa model of evidence-based practice to promote quality care, the diffusion of innovation theory, and the health belief model served as the theoretical underpinnings of the project. Seven patients undergoing chemotherapy received the discharge phone call, and none were readmitted due to cancer-related complications. The unplanned hospital readmission rate was 0% compared to the 14.17% in 2017. The findings of this project might contribute to positive social change by helping the community of patients on chemotherapy to have a better transition process through acquiring necessary information for their postdischarge care and thus mitigating the possible causes of unplanned hospital readmission.

Thesis (M.A. (Clinical psychology )) --University of Limpopo, 2009 / This study is aimed at exploring the influence of shame and stigma on the psychological functioning of HIV/AIDS and cancer patients. Four hypotheses were stated and they are: 1. There will be a difference on the scores of shame and stigma and psychological functioning between HIV/AIDS and cancer patients. 2. Patients who experience shame and stigma are more likely to experience psychological dysfunction than those who do not. 3. Females will experience more shame and stigma, and then consequently report more psychological dysfunctions than males. 4. There will be a difference on the scores of shame and stigma and psychological functioning between age groups. Method: This study used a quantitative research design. A convenient sample of 100 HIV and cancer patients from different race, ethnicities, genders and age groups participated in this study. Statistical tests used to measure the results included means and ANOVAs. Results: Results revealed that HIV patients do experience more enacted stigma and anxiety than cancer patients. Enacted stigma and perceived community stigma were associated with anxiety, and depression. Females experienced more enacted stigma than males whiles males and internal felt stigma than females. There were age differences in the experience of somatic symptoms and internal felt stigma. Conclusion: Recommendation included that shame and stigma be addressed through stress management and the community counselling model.

Background: Cancer treatment and management require complicated clinical decision making to provide the highest quality of care for an individual patient. This is facilitated in part with ever-increasing availability of medications and treatments but hindered due to barriers such as access to care, cost of medications, clinician knowledge, and patient preferences or clinical factors. Although guidelines for cancer treatment and many symptoms have been developed to inform clinical practice, implementation of these guidelines into practice is often delayed or does not occur. Informatics-based approaches, such as clinical decision support, may be an effective tool to improve guideline implementation by delivering patient-specific and evidence-based knowledge to the clinician at the point of care to allow shared decision making with a patient and their family. The large amount of data in the electronic health record can be utilized to develop, evaluate, and implement automated approaches; however, the quality of the data must first be examined and evaluated. Methods: This dissertation addresses gaps the literature about clinical decision making for cancer care delivery. Specifically, following an introduction and review of the literature for relevant topics to this dissertation, the researcher presents three studies. In Study One, the researcher explores the use of clinical decision support in cancer therapeutic decision making by conducting a systematic review of the literature. In Study Two, the researcher conducts a quantitative study to describe the rate of guideline concordant care provided for prevention of acute chemotherapy-induced nausea and vomiting (CINV) and to identify predictors of receiving guideline concordant care. In Study Three, the researcher conducts a mixed-methods study to evaluate the completeness, concordance, and heterogeneity of clinician documentation of CINV. The final chapter of this dissertation is comprised of key findings of each study, the strengths and limitations, clinical and research implications, and future research. Results: In Study One, the systematic review, the researcher identified ten studies that prospectively studied clinical decision support systems or tools in a cancer setting to guide therapeutic decision making. There was variability in these studies, including study design, outcomes measured, and results. There was a trend toward benefit, both in process and patient-specific outcomes. Importantly, few studies were integrated into the electronic health record. In Study Two, of 180 patients age 26 years or less, 36% received guideline concordant care as defined by pediatric or adult guidelines, as appropriate. Factors associated with receiving guideline concordant care included receiving a cisplatin-based regimen, being treated in adult oncology compared to pediatric oncology, and solid tumor diagnosis. In Study Three, of the 127 patient records reviewed for the documentation of chemotherapy-induced nausea and vomiting, 75% had prescriber assessment documented and 58% had nursing assessment documented. Of those who had documented assessments by both prescriber and nurse, 72% were in agreement of the presence/absence of chemotherapy-induced nausea and vomiting. After mapping the concept through the United Medical Language System and developing a post-coordinated expression to identify chemotherapy-induced nausea and vomiting in the text, 85% of prescriber documentation and 100% of nurse documentation could be correctly categorized as present/absent. Further descriptors of the symptoms, such as severity or temporality, however, were infrequently reported. Conclusion: In summary, this dissertation provides new knowledge about decision making in cancer care delivery. Specifically, in Study One the researcher describes that clinical decision support, one potential implementation strategy to improve guideline concordant care, is understudied or under published but a promising potential intervention. In Study Two, I identified factors that were associated with receipt of guideline concordant care for CINV, and these should be further explored to develop interventions. Finally, in Study Three, I report on the limitations of the data quality of CINV documentation in the electronic health record. Future work should focus on validating these results on a multi-institutional level.

The concept of patient empowerment, although acknowledged by the medical community as important, is rarely understood and seldom given priority in the illness trajectory of the cancer patient. A pilot study of a Shared Care Model amongst haematological cancer patients highlighted the fact that some patients spoke of a sense of empowerment and an overall sense of greater control when more fully included in the treatment and management of their condition. The research which forms the basis of this thesis focused on the role of empowerment in the wellbeing of cancer patients. There were three objectives to be met by completing this research. Firstly, to demonstrate that empowerment is a uniquely identifiable concept and can be measured separately from other quality of life indicators. Secondly, the study sought to explore that concept that empowerment takes into account the way in which patients act upon their prognosis and optimise the outcomes of treatment. Thus it is believed that accessing tailored resources and support structures benefit cancer patients and those who are caring for them such as close family members and friends by helping the patient achieve an individual level of empowerment. Finally, the research sought to explore the concept that empowerment improves psychological outcome in patients. The benefits are increased empowerment and an active use of coping strategies amongst patients in order to regain a measure of control over their illness. The Patient Empowerment Scale was developed to measure empowerment as an individual construct. '...' The Patient Empowerment Scale (15 items) was shown to be a reliable measure of empowerment and fitted the model well. A qualitative methodological approach sought to address and explore the second and third concepts. In addition, the concept of empowerment as it relates to motivation and self-efficacy was investigated qualitatively using in-depth interviewing technique. A phenomenological methodology was used to explore the 'lived experience of cancer patients' in regard to regaining control of their illness and the management thereof. Participants were interviewed using concepts identified for the Patient Empowerment Scale such as support strategies and use of resources. A series of interviews with breast cancer patients were conducted whereby patients responded to a number of questions. The questions explored areas such as support mechanisms in relation to cancer, their relationships with health professionals and significant others and their attitude toward and use of other resources and support systems such as support groups, spirituality, complementary therapies. In addition their views on acceptance and adaptation to their altered health status were explored. Results The research confirmed that it is feasible to measure empowerment as a separate quality of life indicator. Furthermore, that empowerment is linked to motivation and self-efficacy beliefs. The research also demonstrated that there are a number of core areas which are fundamental to regaining control and increasing empowerment for patients. These core areas are linked to support mechanisms, willingness to adapt and to access resources tailored to meet their needs. Patient empowerment emerged as a key aspect of enhanced quality of life regardless of prognosis and improved psychological outlook.

Bibliography: leaves 253-286 / vi, 299 leaves : / Title page, contents and abstract only. The complete thesis in print form is available from the University Library. / Thesis (M.D.)--University of Adelaide, Faculty of Medicine, 1988

<p>Sexualiteten är en del av varje människas identitet och har varierande innebörd för den enskilda individen. Förmågan att älska och att känna sig älskad är en viktig förutsättning för god hälsa. Den som drabbas av cancer får ofta sexuella problem och det är flera orsaker till detta. Syftet med studien var att beskriva sjuksköterskors uppfattningar av att samtala med cancerpatienter om sexualitet och hur de uppfattar sexualitetens betydelse för patienterna. En kvalitativ metod med fenomenografisk ansats valdes. Sammanlagt 10 sjuksköterskor intervjuades från varierande arbetsplatser, som möter cancerpatienter i olika delar av vårdkedjan. Resultatet utföll i två delar med en varsin huvudkategorier med tillhörande beskrivningskategorier, kvalitativt skilda från varandra. Under huvudkategorin Hinder och möjligheter för samtal finns beskrivningskategorierna Sjuksköterskans professionalism och personliga mognad, Interaktion och relation mellan sjuksköterskan och patienten samt Omgivningens betydelse. Dessa beskriver förutsättningar för att samtalen ska komma till stånd. Den andra delens resultat består av huvudkategorin Cancerpatienternas behov av stöd och information i samtalen om sexualitet med beskrivningskategorierna Livssituationens betydelse, Positionen i vårdkedjan och dess betydelse samt Konsekvenser av sjukdom och behandling.</p> / <p>Sexuality is a part of every human beings identity and it has a varying meaning for the individual person. The ability to love and feel loved is an important part of good health. People suffering from cancer often experience sexual problems due to several reasons. The purpose of this study was to describe nurses’ perception of talking to cancer patients about sexuality and their experiences of what sexuality means for cancer patients. A qualitative method with a phenomenographic approach was used. Ten nurses from different clinics, who met patients in various places during the trajectory of care were interviewed. The nurses’ perceptions are captured in two main categories and six descriptive categories. The first of the two main categories Obstacles and possibilities for the conversation describe the necessary conditions for the dialog together with three descriptive categories: Nurse’s professionalism and individual maturity, Interaction and relationship between the nurse and the patient, and The meaning of the surrounding structure. The second of the two main categories was The cancer patients’ need for support and information. It describes the nurses’ perceptions of how the patients’ need for support and information about sexuality varies during the trajectory of care. Descriptive categories to this main category were: The situation of life, The position in the trajectory of care and its meaning, and Consequences of the illness and its treatment.</p>

Aim: The overall aim of this thesis was to acquire knowledge about daily life with focus on eating problems during the trajectory of care for patients with head and neck cancer treated with radiotherapy. Method: The data in study I were gained from medical and nursing records of 50 patients. Documented parameters of eating problems, their causes and consequences, and undertaken interventions were collected before treatment, during radiotherapy, and one, six, and twelve months after completion of treatment, using a study-specific audit instrument. Data were analysed with descriptive and inferential non-parametric statistics. In study II eight patients were interviewed during the radiotherapy treatment period with focus on experiences of eating problems. In study III nine patients were interviewed six to twelve weeks after treatment with the focus on experiences of daily life during the trajectory of care having eating problems. In study IV twelve patients were interviewed about their conceptions of the significance of a supportive nursing care clinic during the whole trajectory of care. Data were analysed with interpretative phenomenology (II, III) and phenomenography (IV). Findings: The four studies showed that being a patient in the trajectory of care often meant that life was disturbed and threatened. This was partly due to the eating problems and their consequences, which could occur during the whole trajectory of care (I, III, IV) but was experienced as most intense and severe during radiotherapy (II) and the nearest weeks after completion of radiotherapy (III, IV). The disturbances and threats experienced due to eating problems could affect the whole person as they were physical (I-IV), psychological, social and existential (II, III). The experiences of eating problems due to the tumour and its treatment and the experience of having cancer per se were strongly connected as one phenomenon, which disturbed and threatened the informants’ daily life. The other part that disturbed the patients’ life was the waiting in suspense. A long and trying waiting in uncertainty was experienced due to lack of knowledge and support, practical as well as emotional. This was most pronounced during pauses in radiotherapy (III) and after completion of the treatment when the lack of support from the health care was obvious (I, II, III). The patients were then most often left to their own devices. In order to endure, they needed both inner strength, described as own coping strategies, and strength from outside, described as support from family, friends and health care professionals (II, III). The nurse clinic was found to give a hand to hold during the whole trajectory of care (IV). It could meet these patients’ needs of knowledge, care and support, both concerning practical measures related to the eating problems and other side-effects of the treatment, and concerning their emotional needs. In addition the nurse clinic could support the relatives in their worries and anxiety (IV). Conclusion: This thesis showed the necessity of continuous assessment, treatment and evaluation of patients’ problems, and the patients’ needs of information and support throughout the trajectory of care.